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User and Public Involvement inHealth Services: a LiteratureReviewAuthors: Dr Julie Ridley and Lyn Jones,Scottish Health Feedback

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User and Public Involvement in Health Services

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A Literature Review

This report is dedicated to the memory ofDavid Brandon. David’s life’s work was aboutuser empowerment and involvement. Davidwas working on this review shortly before hedied in November 2001. We hope that thematerial here will encourage many otherpeople to put into effect the values thatDavid believed were so important.

A Literature ReviewUser and Public Involvement in Health Services

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Executive summary

BackgroundScottish Human Services commissioned this literature review aspart of its work for the Scottish Executive funded Partners inChange project. Together with the toolkit Building StrongFoundations, it forms a resource for helping to build an NHS that“listens better to patients and responds more effectively to theirneeds” (Our National Health, 2000).

The review is of literature published primarily in the UK during thepast 5 years, examining theories and involvement initiativesacross the health and illness spectrum, and reflecting on theeffectiveness of different approaches. It was carried out byScottish Health Feedback over three months between January toMarch 2002. The main focus has been on literature documentingthe experience of health services attempting to involve patientsand the public more, identifying where possible what has workedand any barriers. It had three main aims:

• To provide evidence to persuade sceptics in health andother services that partnership projects and otherinvolvement initiatives are indeed worthwhile andproductive enterprises with positive and concreteoutcomes.

• To seek out empirical evidence of “how to do it” and“what works” wherever this existed.

• To provide a firm foundation for improving and generatingmore involvement initiatives in the future.

The review sought to cover the literature in respect of three maininterfaces with health services:

1. In respect of individuals own direct care;

2. Involvement in monitoring and improving the quality ofservices.

3. Involvement in strategic planning and developments.


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A Literature Review

General IssuesThe review discovered that ‘involvement’ is not an homogenousterm and has a variety of meanings attached to it. There were twobroad approaches identified from the literature - consumerist anddemocratic approaches. However, involvement was about morethan consumerism, and in some sense, this notion contradictedthe growing desire to make health services more ‘person-centred’.

It is often helpful to distinguish between involving people asindividual users/patients and carers, and involving them asgroups, for example, users’/patients’ groups or as citizens. Further,a distinction is made in the literature between ‘reactive’ and ‘pro-active’ approaches to involvement, which not only affect thepurpose but the way involvement activities are carried out. Beingclear about why, who and how involvement will take place isessential. Involvement is a multi dimensional concept, forexample, levels of involvement vary considerably from merelysharing information through to user participation and direct user-control. The review examined four main types of involvement: thedirect involvement of individuals and carers in their own healthcare; user and public involvement in service quality; in policy andplanning; and involvement through community developmentapproaches.

Involvement in Health ServicesThe literature identifies a range of benefits from involvementincluding improved clinical outcomes, more appropriate andrelevant services, and improved user/patient satisfaction. Thebarriers identified include staff’s negative perceptions ofinvolvement, a lack of understanding of the nature of user andpublic involvement, skill and knowledge deficits, resource issues,and a lack of joint working. The history of public involvement inhealth services is somewhat disappointing but there has neverbeen such a promising time as now to promote better user andpublic involvement for a variety of reasons. It has been historicallyweak because it has developed in an ad hoc and isolated way.Despite an increase in ‘involvement’ activity, there is littleevidence of any real shift in power or that local people can holdhealth services to account.


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As Bell (2000) points out, public involvement should be the“bread and butter to a responsive, equitable and efficient healthservice” and the literature is replete with references as to thetheoretical benefits of involvement. Similarly, Hogg (1999) andBarnes (1997) argue that wider participation requires long terminvestment of resources to encourage and support users and thepublic, thus giving them the confidence and means with which toparticipate in meaningful ways.

Involving Individuals in their Own CareThere are strong arguments for involving people in their own careand research has consistently found that users/patients wantmore ‘person-centred’ consultations with health careprofessionals. The quality of relationship with health professionalsis a key factor in the quality of care identified by users/patients.Research has demonstrated close links between person centredvalues and approach and effective involvement, and a shift inthinking to acknowledging the expertise of users about what it islike to live with their illness or disability.

Reasons for involving users/patients in their own care include thatit results in better health and treatment outcomes, and increaseduser/patient satisfaction. Studies consistently emphasise thatperson-centred approaches require time, information and training,better interpersonal communication, mutual understanding andtrust. The main barriers to increasing the level of partnership aretime pressures, the lack of training, skills and experience, and lackof information.

The three most commonly discussed models in relation toinvolving users/patients in decision-making are - paternalistic,informed decision-making and ‘professional-as-agent’ models.While there is knowledge about what shared decision-making is,there is less evidence of it happening in practice. Consequently,researchers have described shared decision-making as the“neglected half of the consultation”. There is evidence that users/patients want more information, and positive results have beenobtained from involving users/patients and their carers inproducing information. Although patient held records offer


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A Literature Review

potential for meeting some of the criticisms of poorcommunication and coordination in health, there is still a needfor further research evaluating practice.

Involvement in Monitoring and Improvingthe Quality of ServicesIn addition to involving users in their own care, it is important toconsider ways of involving users/patients in defining what qualityis as well as measuring quality in services. Involving users/patients in the quality of services is based on the principle thatusers are best placed to say what they want out of services andwhether the services are doing a good job. To date, the scope ofuser/patient involvement in clinical audits has been largelylimited to one-off satisfaction surveys. Nevertheless, there arestrong arguments in the research for user/patient involvement inmedical audits.

While there is some evidence of user involvement in settingservice standards in other public services, there is little evidenceof this happening in health services and there are still few goodexamples of user involvement in the whole process of evaluationand service audit. Involving users and carers in all stages of thedevelopment of standards, including clinical practice guidelines,purchasing and commissioning of services and research is animportant element of quality assurance. However, genuineinvolvement takes time and resources.

Involvement in Planning and DevelopmentThe principle that people as users and carers, potential users andinterested citizens should be involved in the planning of healthand social care services has become more widely accepted sincethe advent of community care. User involvement can also takeplace at a national strategic level. However, the reality often fallsshort of the ideal and there is less ‘real’ involvement in planningin the longer term than might be expected. User involvement inplanning is essential so that it is informed by real needs,aspirations, personal experience and direct evaluation. Ideally,


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users should be involved from the earliest stages of planning asthis offers the best chance that more responsive and user-ledservices will be developed.

Important power differentials need to be acknowledged though,and the need for acceptance of the unique contributions ofindividual stakeholders in the planning process. However, it isonly through involving local communities that agencies can arriveat a better understanding of how local services need to changeand develop. In addition, it is important to tap into the expertiseof local user groups as well as being aware of national researchpresenting users’ views. Research evidence on involving users/patients in rationing and prioritising services is contradictory, butthis depends on the level of information shared and how theissues are presented. Effective involvement depends uponallocating sufficient time to discuss options and issues.

Repertoire of Involvement MethodsThere are many different ways of listening to people both asindividuals and as collectives or groups. One of the difficulties isthat “involvement” is, or should be, something that occurs inevery facet of health care and in every encounter between userand health care services - for example, a consultant or GP wholistens attentively to his/her patient and is prepared to alter theirviews of the treatment plan etc because of this interaction. Thiscan hardly be labelled as a “method” or still less a “technique” ofinvolvement. This is an exceedingly important general point. Themost significant forms of involvement are those that become partof the day-to-day practice of health care delivery and planning,whether at the level of the individual encounter or at a morecollective level, yet these are often the least visible.

There is a danger that focusing on methods through publishedmaterials creates an impression that promoting involvement isonly a matter of adopting and applying some identifiable“techniques”. A repertoire of methods should not be mistaken forthe whole project of achieving greater involvement. The differentways and methods by which the public are asked their views andopinions are “not neutral techniques” (Jones and Jones, 2002).


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A Literature Review

Some require people to respond as consumers or users ofservices, while others support people to participate as citizens.Many methods have been categorised as research, consultativeor deliberative, and the literature evaluating these is discussed. Abroad array of methods/ways of involving users and the publichas been tried. No one method constitutes ‘involvement’, andthere are no ‘recipes or fixed formulae’. There is no ‘one rightmethod’ and it is possible to use one method to develop another.

Involvement through CommunityDevelopment ApproachesCommunity development approaches have been discussed as anexample of both a democratic and truly proactive approach toempowering individuals and communities to be involved inidentifying needs and gaps in services and developing newservice responses. It is essentially a long-term process of involvingindividuals and communities in their own health. Communitydevelopment uses a variety of participatory research methodsand activities that address four dimensions: personalempowerment, positive discrimination, community organisation,and participation and influence. These have grown out ofdissatisfaction with the traditional power relationships in theproduction of research. The main purpose of participatoryresearch approaches is to raise awareness and ensure that thoseaffected by the research retain control from the outset.

Community development recognises that access to health careservices is a less significant determinant of health than manyeconomic, social and environmental factors. Such approacheschallenge the definition of health as an individual problem forwhich there are individual solutions and health care systems thattreat symptoms and not the root causes of ill health. Communitydevelopment is still at a relatively early stage of developmentwithin mainstream agencies and there are few written accountswithin the field of statutory health care.


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Discussion and recommendationsOne of the conclusions from the review is that it is possible to beengaged in numerous involvement activities without reallyinvolving people if professionals continue to drive the agenda andmake decisions about treatments and services without takingusers’ views into account. In the review, a number ofrecommendations are identified that constituted ‘good’ user andpublic involvement. These are:

• There is an ‘ethic of involvement’, it is not an add on or a‘top down’ approach.

• A strategic approach is adopted across the wholeorganisation with strong leadership.

• There is both community and organisationaldevelopment.

• Partnerships are formed with other local agencies, e.g.local authorities.

• No single approach or technique is taken to constituteuser and public involvement.

• Various techniques can be used, chosen according to thepurpose of the initiative.

• The resource implications of involvement areacknowledged.

• There are tangible gains from participating and these arecommunicated.

• Communication mechanisms are set up to ensure regularfeedback in accessible formats.

• Involvement strategies are evaluated and the process isone of continuous learning.


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A Literature Review


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ContentsAcknowledgements

Executive summary

1. Introduction _________________________________ 15

1.1. Background _________________________________ 16

1.2. Aims and purpose of the review ________________ 17

1.3. Definitions and conceptual framework ___________ 18

1.3.1. Consumerist and democratic approaches _________ 20

1.3.2. Reactive and pro-active involvement _____________ 21

1.3.3. Types of involvement _________________________ 21

1.3.4. Level of involvement __________________________ 22

1.4. Method and scope of the review ________________ 24

1.5. Report structure______________________________ 26

2. General Overview ____________________________ 27

2.1. Introduction _________________________________ 28

2.2. Brief historical outline _________________________ 28

2.3. Extent of ‘involvement’ in the NHS ______________ 33

2.4. Benefits of involvement _______________________ 35

2.5. Challenges/barriers ___________________________ 37

3. Involvement of Individuals in their Own Health Care 41

3.1. Introduction _________________________________ 42

3.2. User/patient participation as a concept ___________ 42

3.3. Why involve users/patients? ____________________ 45

3.4. Users’ expert knowledge_______________________46

3.4.1. ‘Person centred planning’ ______________________ 47

3.5. Shared decision making _______________________49

3.6. Accessing information _________________________ 50

3.7. Patient or client held records ___________________ 52

3.8. Effective involvement and independent advocacy __ 53


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A Literature Review

3.9. Organisational and professional implications_______ 54

3.10. Health consumer groups/patient groups __________ 56

4. Involvement in Monitoring and Improving the

Quality of Services____________________________ 57

4.1. Introduction _________________________________ 58

4.2. Involvement in the quality of services ____________ 58

4.3. Involvement in looking at how services

are performing_______________________________60

4.4. Involvement in setting standards ________________ 62

4.5. Involvement in commissioning and

purchasing services ___________________________64

4.6. Involvement in research _______________________64

5. Involvement in Planning and Development _______ 67

5.1. Introduction _________________________________68

5.2. Involvement in planning _______________________68

5.3. The informed views of citizens __________________70

5.4. Involvement in deciding priorities and rationing ____ 71

5.5. Involvement at national level ___________________ 72

6. ‘Repertoire’ of Involvement Methods _____________ 75

6.1. Introduction _________________________________76

6.2. Classifying methods __________________________ 77

6.2.1. Qualitative methods __________________________ 78

6.2.2.Quantitative methods _________________________86

6.2.3.Consultation techniques _______________________ 87

6.2.4.Deliberative approaches _______________________88

6.3. Other methods ______________________________89

7. Involvement Through Community DevelopmentApproaches _________________________________ 91

7.1. Introduction _________________________________92

7.2. Defining features _____________________________92


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7.3. Community development and health ____________ 95

7.4. Participatory research approaches _______________96

7.5. Community development at strategic level ________ 97

7.5.1. Craigavon and Banbridge Community Health and SocialServices Trust ________________________________ 97

7.5.2. The Addiewell Project _________________________98

7.5.3. Working together: Learning together _____________98

7.6. Challenges of community development __________98

8. Discussion and Recommendations _____________ 101

8.1. Introduction ________________________________ 102

8.2. An ‘ethic’ of involvement______________________ 102

8.3. Strategic approach ___________________________ 103

8.4. Community and organisational development _____ 105

8.5. Partnerships ________________________________ 106

8.6. Matching methods to purpose _________________ 107

8.7. Resources _________________________________ 107

8.8. Tangible gains ______________________________ 108

8.9. Regular feedback ____________________________ 108

8.10. Long term commitment ______________________ 109

8.11. Evaluation _________________________________ 109

8.12. Shared principles and values __________________ 110

9. References and Bibliography ___________________ 111

Appendix 1 _____________________________________ 139


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A Literature Review

AcknowledgementsScottish Health Feedback wishes to acknowledge the help andsupport of several individuals and organisations, includingPartners in Change and especially Anne Connor whocommissioned the work. The literature searches built onpreliminary work started by Professor David Brandon in 2001,before his death in November. He started this work in associationwith his son, Toby Brandon.

We are especially grateful to information specialists Gill Hewittand Linda Cameron at the Scottish Health Services Centre HealthManagement Library in Edinburgh who facilitated the initialliterature searches as well as providing access to materials, and toSylvia Cox and Paula Ribeiro, of the Dementia ServicesDevelopment Centre, Stirling University, for sharing their work onthe Communication for Change project. Also, thanks to DrAndrew Thompson at the University of Edinburgh for sharing withus an early draft of a literature review on patient and publicinvolvement for the Department of Health in England.

A number of individuals and organisations kindly sent us reportsand literature searches including Jane Jones who advised on theSection on community development approaches, Tom Garnett atDundee Association for Mental Health, Jenovefe Shepherd at theScottish Association of Health Councils, and the ScottishDevelopment Centre for Mental Health.

Julie Ridley carried out a literature search on involvement inhealth services and wrote this report with Lyn Jones.

Scottish Health Feedback


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1. Introduction

Key points - section 1• ‘Involvement’ is not an homogenous term and has a

variety of meanings attached to it.

• The terms ‘involvement’, ‘participation’ and ‘consultation’are sometimes used interchangeably, and at others tomean different things.

• Two broad approaches to involvement were identifiedwithin the literature - consumerist and democraticapproaches.

• It is often helpful to distinguish between involving peopleas individual users/patients and carers, and involvingthem as groups, for example, users’/patients’ groups or ascitizens.

• A distinction is made in the literature between ‘reactive’and ‘pro-active’ involvement, which not only affects thepurpose, but the way involvement activities are carriedout.

• Being clear about why, who and how involvement willtake place is essential.

• Involvement is a multi dimensional concept - forexample, levels of involvement vary considerably frommerely sharing information through to user participationand direct user-control.

• This review has examined four main types ofinvolvement: the direct involvement of individuals andcarers in their own health care; user and publicinvolvement in service quality; in policy and planning;and involvement through community developmentapproaches.


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A Literature Review

1.1. BackgroundScottish Human Services as part of its work for the ScottishExecutive funded Partners in Change initiative, commissioned areview of the literature on involvement in health services.Partners in Change is a capacity building initiative whose purposeis to promote involvement throughout the NHS in Scotland. InOur National Health - A plan for action, a plan for change, (2000),central government stated its vision for an NHS that “listens betterto patients and responds more effectively to their needs”.Ensuring patients have a stronger voice and involving people andcommunities in the design and delivery of health services wascentral to “a truly modern, responsive health service.” This policycommitment to involvement was further strengthened by thepublication of the guidance, Patient Focus and Public Involvement(Scottish Executive, 2001a).

Although involving people in health services has become awidely familiar concept, now firmly embedded within nationalhealth services policy, as Ritchie observed:

“While no-one would say they were against partnership, noteveryone is completely convinced it can work. There are somepeople who are sceptics, and who see partnership as an extrasomething you have to fit in on top of all the other meetings.There are also a lot of other people who are trying hard butdoubt if the level of change they are seeing is worth the effort”.(Partners in Change, 2001, page 4)

It was in the context of this concern that this literature review wascommissioned and carried out over three months betweenJanuary-end of March 2002. The work was intended tocomplement the development of a ‘Toolkit for Involvement’ asmentioned in Patient Focus and Public Involvement. It aimed toset the discourse within the experience of involvement in theNHS, as well as the theory. At the same time as this literaturereview was being undertaken, academics at Edinburgh Universitywere completing a research study exploring different perceptionsof participation for the Department of Health in England and thisincluded an extensive literature review of patient and publicinvolvement in health care (McCrae et al, 2002). While there is aninevitable overlap of some material, it is envisaged that thereviews will prove complementary.


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1.2. Aims and purpose of the reviewThis brief literature review had three rather ambitious aimsspecified at the outset. As stated, one was to provide evidence topresent to sceptics in health and other services to help themjudge whether partnership projects and other involvementinitiatives are indeed worthwhile and productive enterprises withpositive and concrete outcomes. The motivation behind thereview is therefore undoubtedly associated with an agenda, onethat is broadly in favour of more and better involvement.However, we have sought to be neutral and even-handed in oursearches and in our choice of material to present, looking both forliterature presenting the benefits of involvement in healthservices and that presenting any barriers to it and problems itmight raise.

The second aim was to seek out empirical evidence of “how todo it” and “what works” wherever this existed. And the third wasto provide a firm foundation for improving and generating moreinvolvement initiatives in the future. In short, the review wasintended to build the argument for better involvement in healthservices and wherever possible, to identify elements of goodpractice. If involvement is to be perceived as more than a seriesof techniques, those working in the health services require morethan mere descriptions of different processes and methods. Thisliterature review, therefore, has attempted to discuss both generalthemes in relation to involvement and specific experiences of thepractice of involving users/patients and the public.

Involvement in the health services covers a vast range of activitiesfrom information provision about health problems and services,to the active involvement of users and communities in decision-making and the design of future health provision. This review hassought to cover the literature in respect of three main interfaceswith health services:

1. In respect of individuals’ own direct care;

2. Involvement in auditing, monitoring and evaluatingservices and their quality;

and

3. Involvement in strategic planning and developments.


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A Literature Review

In addition, it has covered some of the literature on communitydevelopment approaches to health.

In doing so, it has concentrated mainly on policy documentspertaining to Scotland. While the searches performed andliterature retrieved were broad based using general keywordssuch as ‘involvement’ and ‘participation’ in all these areas, thisreview cannot claim to have included all of the literature on allaspects of health and involvement: limited as it is to what couldbe searched, accessed and read within a three-month period. Theemphasis is therefore on the inclusion of empirical studieswherever these existed, and a more detailed bibliography appearsat the end of the report for the more inquisitive reader to followup.

1.3. Definitions and conceptual frameworkTo be involved means to be implicated, be bound up with, to beemotionally concerned, to be engaged with, or to comprehend.(Chambers Dictionary, 1993)

Involvement is a generic or umbrella term to which a plethora ofmeanings have been attached. When it is used in a loose way, itcan be rather uninformative (Readers Digest Association, 1985).Simply saying that people are ‘involved’ in health services forinstance, tells us nothing about the way they are involved, theintensity, what it is they are involved in, the range of peopletaking part and so on. The Latin roots are to be found in‘involvere’ meaning ‘to enwrap’, from ‘volvere’, ‘to roll or turn’. TheChambers Dictionary definition and its Latin roots imply closeinterconnection and engagement.

There is considerable diversity over definition to be found in theliterature and different conventions are in widespread use. Whilesome authors have used ‘consultation’ as a term to convey arange of approaches to involving the public and communities(e.g. Laird et al, 2000), for others, ‘consultation’ implies a passiveor even tokenistic attempt to engage with the public (McCrae etal, 2002; Scottish Association of Health Councils, 1999: Arnstein,1969). There are a great many meanings associated with the


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concept of involvement in state services and this is reflected inthe following quotation cited in Lupton et al (1998):

“The ambiguity attached to participation has helped to foster itsown cause. Because so many different hopes have been linkedwith it, so many different expectations about what it will achieve,it has been embraced by spokesmen of highly varying politicalhues. Consumers have advocated participation in order toachieve their particular ends and the service providers havesimilarly welcomed it in order to serve theirs. The veryuncertainty of its impact has enabled a common rallying call.”(Richardson, 1983, p99)

Shifts in political ideology have influenced how ‘involvement’ isportrayed. Hogg (1999) reflects on the changes in thinking in thefollowing four distinct models of operation:

1. Traditional model of paternalism - This model assumes‘professionals know best’, requiring patients to trust in theskills, knowledge and ability of clinicians.

2. Consumerist model - This model assumes thatindividuals are in charge of getting the ‘best buy’ and thatwith internal competition, consumers can decide to taketheir custom elsewhere if they do not like what theyreceive.

3. Partnership model - This model views the giving andreceiving of health care as a negotiation agreed betweenthe patient and professionals and is more in line with thecurrent emphasis on user and public involvement.

and

4. Autonomy model - This model places respect for theindividual first and recognises the different perspectivesof patients and professionals.

It is likely that elements of all of these ‘ideal’ models could befound to be operating somewhere within current services. Thevalue of such models is in providing a theoretical framework forbetter understanding and discussing experience.


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A Literature Review

1.3.1. Consumerist and democratic approaches

Two broad approaches to involvement can be identified withinthe literature, although there are variations on the theme (Mullenand Spurgeon, 2000; Lupton et al, 1998). These are consumeristapproaches and democratic approaches. Many commentators forinstance, have located the growth of interest in involvementwithin a general increase in ‘consumerism’ in the late 1960s and1970s (Mullen and Spurgeon, 2000). The consumerist approach isbased upon the private sector notion of ‘markets’ as in Hogg’smodel 2 above. It emphasises the importance of ‘marketresearch’ to identify the preferences of individual customers andto enhance the organisation’s market competitiveness. It alsoplaces emphasis on the rights of consumers to information,access, choice and redress in relation to specific products orservices. Some have argued however that this notion of healthservice users as ‘consumers’ contradicts the growing desire tomake health services more ‘person centred’, and that while theact of getting closer to users of services might involveconsumerism, it goes beyond it. Williams and Grant (1998) forinstance commented:

“People are more than consumers. To be people-centred and tovalue individuals requires an appreciation of the totality of theindividual and not concentration on a specific role. This is surelythe same criticism which has been laid at the door of themedical profession: in treating people as patients they havereduced the individual and thus devalued them.” (Page 86)

The second main approach, the democratic approach, relates topeople in their capacity as ordinary citizens and taxpayers withrights to access to services and to contribute or participate withothers collectively in the society in which they live. This approachemphasises equity and empowerment with participation as a keyconcept (Lupton et al, 1998). There are two main principlesunderpinning this approach: that public participation is beneficialto maintaining a healthy democracy and in allowing people tobecome full citizens, and second, that the diversity of interests insociety should be fully represented in the political process.

A further refinement of this analysis is Barnes’ (1997) thesis that inorder to understand involvement in health services, it is first


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necessary to establish the motivation behind it. Barnes identifiedfour broad purposes. The first purpose was to meet the needs ofthe organisation, and to learn how users perceive services, tomeasure quality, effectiveness, and equity. A second purpose wasto achieve individual empowerment, enabling people to becomeeffective consumers of health services and to take action toimprove their own health status. Third, public involvement canenable the expression of aspirations and become “an agent ofchange at a system level” and lastly, involving people in healthservices can help to enhance democratic accountability andcitizenship.

1.3.2. Reactive and pro-active involvement

Another important distinction that has been made by someauthors is in describing involvement as either ‘reactive’ or ‘pro-active/initiator’ involvement (Mullen and Spurgeon, 2000). Thisdistinction concerns not only the approach taken to involvementand the methods used, but also the view taken of the purposeand the very nature of involvement. Where involvement is‘reactive’, the health care system asks people to react to activities,services, plans, proposals and priorities. In contrast, ‘pro-active’ or‘initiator’ involvement means people as service users and citizensbecoming involved in initiating and formulating definitions ofneed and making proposals for new or improved services. Inmaking this distinction, it would appear that many activitiescurrently falling under the umbrella of involvement are of areactive nature compared to those which have involved peoplethrough community development approaches, which set out toensure people’s participation in agenda setting, needs definitionand problems solution. By way of differentiating between reactiveand proactive approaches in this review, Section 7 focusesspecifically on involving people through community developmentapproaches.

1.3.3. Types of involvement

It is possible within the literature to identify different types andlevels of involvement. In short, three main types can bedistinguished: involvement of individuals in making decisionsabout their own treatment and care; involvement in examiningand improving the quality of services; and as taxpayers and


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A Literature Review

citizens in policy and planning (McCrae, 2002; McIver andBrocklehurst, 1999; Charles and De Maio, 1993). While it is usuallyagreed as helpful to differentiate between individual andcollective involvement, this does not necessarily equate with‘how’ or ‘what’ each can be involved in. For instance, bothindividuals and groups can be involved in assessing andevaluating service quality and in strategic planning and servicedevelopment.

The Government White Paper, Our National Health (2000)identified four main types:

1. Individual patients (or carers) in their own care.

2. Patients in monitoring and improving the quality of carein an existing service.

3. Patients and the public at an organisational level.

4. Patients and the public in planning changes in serviceprovision.

Additionally, some authors distinguish between involvement at anational level, as well as involvement in locality commissioningand in defining health needs (McCrae et al, 2002; Barnes, 1997).

1.3.4. Level of involvement

As well as examining types of involvement, qualitative distinctionscan be made between different levels or degree of interaction.For example, Charles and DeMaio (1993) as cited in McCrae(2002) identified three main levels: consultation, partnership andultimately control. The Scottish Association of Health Councils etal (1999) differentiate between communication (establishingmeaningful dialogue), consultation (asking users’ views) andpartnership (equal relationship between users and professionals).The ‘ladder of participation’ developed by (Arnstein, 1969), is anexpression of this idea of different degrees of interaction, makingit clear that relatively few ‘rungs’ can be described as real ‘citizenpower, and setting it within the context of wider power relations.For instance, Arnstein argued that consultation was nothing morethan tokenism and that partnership would be a better route tocitizen empowerment. Arnstein preferred the notion of


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‘participation’ to ‘involvement’ because of its emphasis oninteraction. The ‘ladder of participation’ is described in the Figurebelow.

Figure 1: Arnstein’s ladder of citizen participation, (1969)

8 Citizen control7 Delegated power Degrees of citizen power6 Partnership5 Placation4 Consultation Degrees of tokenism3 Informing2 Therapy1 Manipulation

Arnstein had suggested that most activities taking place under theumbrella of participation were hollow, and that only the top threerungs (partnerships, delegated power and citizen control)involved genuine participation or dialogue with people. A numberof studies since Arnstein’s ‘ladder of participation’, have adaptedthis conceptualisation including Hoyes et al (1993), cited in Smalland Rhodes (2000), who developed the following ‘ladder ofempowerment’:

Figure 2: Hoyes et al (1993) ‘ladder of participation’

HIGH Users have the authority to take decisions

Users have the authority to take selected decisions

Users’ views are sought before decisions are finalised

Users may take the initiative to influence decisions

Decisions are publicised and explained beforeimplementation

LOW Information is given about decisions made

Non-participation


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A Literature Review

While widely acknowledged as a useful model, there arecriticisms of the ‘ladder of participation’ concept in itspresentation of a linear process, and its failure to taken account ofthe range and complexities of modern day relationships betweenusers and service providers (Small and Rhodes, 2000; Laird et al,2000). Nevertheless, it is helpful to have ways to distinguishbetween involving users/patients or the public through merelygiving information or gathering information about people’s viewsof services through one-off focus groups or surveys and longer-term initiatives offering community or user control (SAHC et al,1999; Taylor, 1996).

1.4. Method and scope of the reviewThe literature on the subject of information for patients in itself isvast (Olszewski and Jones, 1998). There is also an increasing bodyof literature on involvement in planning, albeit mainly in relationto local government and the implementation of Community Carepolicy. Additionally, from the late 1980s, there is published workon community development and more recently, the new publichealth agenda (Jones, 1998). This review does not make anyclaims for comprehensiveness in tackling the subject ofinvolvement in the health services but attempts to identify themain themes running through the literature. While it ispredominantly about involvement in health services, it hasinevitably reviewed some literature about involving people inhealth generally when discussing community developmentapproaches for example.

Sources for the literature review built on the reading lists and websearches initially carried out by David and Toby Brandon, as wellas by Paula Ribeiro and Sylvia Cox at the Dementia ServicesDevelopment Centre’s ‘Communication for Change’ project(which is also linked to the Partners in Change project andfunded by the Scottish Executive). Keywords includingparticipation, public, patient, user, involvement, planning,consultation, consumer, and combinations of these, were used tosearch online databases through the Scottish Health ServicesCentre. These included the Centre’s Health Management Library;Health Management Information Consortium or HMIC (includingthe King’s Fund library database); the Applied Social ScienceIndex or ASSI; Joseph Rowntree Foundation; and the Cochrane


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Library. In addition, reference and bibliography lists of books andjournal articles obtained were scanned for useful material.

Websites such as the Designed to Involve website, the ScottishDevelopment Centre for Mental Health and other specialistwebsites were searched for references. Books and journal articleswere accessed through the SHSC Health Management Library,Universities of Edinburgh and Dundee, and the British MedicalJournal online. The Dementia Centre also provided specialistreferences. In addition, the Scottish Consumer Council and theScottish Association of Health Councils were contacted directly.

In common with other researchers, it was soon discovered thatthe size of the literature base on this topic was potentially infinite,particularly given the growing political and academic interest ininvolvement and participation in public services over the last 25years (McCrae et al, 2002). It was essential to limit the scope ofthe literature review so that the task became manageable withinthe short time available. This meant focusing the review as far aspossible on:

• theories and involvement initiatives across the health andillness spectrum over the United Kingdom , primarilyusing literature published in the past 5 years;

• research findings and outcomes, emphasisingpartnerships or initiatives that worked but also outliningbarriers to change;

• different approaches, and identifying the achievementsmade so far and providing evidence to build on them;

• drawing upon existing literature reviews;

• reflecting the range of involvement activities includingone-off consultation, audits, assessment of services,setting quality standards, training/supporting people tohave more say, community development approaches etc.

While we have not specifically left out any material relating toparticular groups of users or communities, the review tends toreflect where the balance lies within the literature, and there maytherefore be inequitable treatment of some areas.


26

A Literature Review

Where the review touches on matters of NHS structure andpolicy, there is a particular focus on the position in Scotland.

1.5. Report structureA number of key areas have been addressed in this report,including in Section 2, a brief historical overview of involvementand how far it has evolved in the NHS, the forms involvementmight take, the benefits that have been identified for individuals,the public and the NHS itself, as well as the challenges. Section 3examines the literature concerning the involvement of individualsand carers in their own treatment and care. Section 4 then looksat what has been written about user and public involvement inauditing, reviewing and monitoring the quality of services. Section5 then focuses on user and public involvement in policy, strategicplanning and service development. Section 6 explores therepertoire of methods that exist as helpful tools to involve peoplein different ways and for different purposes, while Section 7 brieflylooks at the literature on longer-term approaches to involvingcommunities in their own health, collectively referred to ascommunity development approaches. Section 8 then discussesthe ‘findings’ of the review more generally and tries to drawtogether the characteristics of effective involvement. Section 9provides a detailed reference and bibliography on involvement inhealth services.


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2. General Overview

Key points - section 2• Involvement is far from a new concept. In recent

decades, user and community movements, policydevelopments, increased demands on services andresource prioritisation, and growing user litigation havecontributed to moving involvement up the policy agenda.

• In Health, the focus on involvement has historicallytended to be at the individual level, while at a strategiclevel, involvement is generally underdeveloped.

• Despite growing interest in promoting involvement, mostcommentators agree its development in health serviceshas been slow and patchy.

• There are several reasons for this: two key ones are,confusion about just what it is; and the uncoordinatednature of many projects.

• Despite an increase in ‘involvement’ activity, there is littleevidence of any real shift in power or that local peoplecan hold health services to account.

• The literature identifies a range of benefits frominvolvement including improved clinical outcomes, moreappropriate and relevant services, and improved user/patient satisfaction.

• The barriers identified include negative perceptions ofhealth service staff, a lack of understanding of the natureof user and public involvement, skill and knowledgedeficits, resource issues, and a lack of joint working.

• Further research is needed to evaluate the involvementapproaches being adopted by health services.


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A Literature Review

2.1. IntroductionThis Section briefly examines literature that has traced thehistorical development of involvement in the NHS suggesting avariety of reasons for the current focus on involvement, and thenlooks at the evidence about its implementation. There is acompelling case for user and public involvement and the reviewhighlights literature showing the benefits as well as barriers orchallenges.

2.2. Brief historical outlineInvolvement is currently (early 2002) high on the policy agendaand there is, arguably, an unparalleled window of opportunity foradvancing effective involvement in the health services (ScottishExecutive 2001a, 2000a). Indeed, how the NHS engages with itsvarious publics has been dubbed “the greatest challenge forhealth services at the beginning of the twenty-first century”(Brooks, 2001), and one that is “critical to its future development”(Barnes, 1997). Several authors argue, especially in relation tonew primary care structures, that in the present there is uniquepotential to develop a more integrated approach to partnershipwith users and the public (Hopton and Hill, 2001; ScottishAssociation of Health Councils et al, 1999). Even the briefest scanof the literature shows a mushrooming of interest in involvementover the past 25 years. The range of multi-disciplinary literatureconcerned with both theoretical and ideological discourse, as wellas more practical issues, is now “diverse” and “something of aminefield” (Gillam and Brooks, 2001).

The context of this growth is one of increasing demands onhealth services, resource prioritisation, and growing user litigationresulting in low professional morale (Brooks, 2001). Central tocurrent policy and organisational change is the concept ofdemocratic accountability and citizenship and the desire to makeservices more responsive to users’ definitions of need (McCrae etal, 2002; Scottish Executive 2001a, 2000a; Brooks, 2001). One ofthe most significant changes in the NHS has been the shift inpolitical rhetoric from the ‘market’ model and the notion of users/patients as consumers, to the ideology of citizenship anddemocratic accountability (McCrae et al, 2002; Barnes, 1997).From the beginning, Lupton et al (1998) argued, the relationship


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of the NHS to the public has been characterised by a focus onthe individual user/patient. The inherent tensions betweenmedical power, managerial accountability and public participationhave remained a constant theme in subsequent reviews of theNHS. This historical legacy has emphasised clinical freedom overthe interests of users and the public and has meant managerialaccountability of doctors was virtually non-existent except throughprofessional organisations. Public involvement in health care hasbeen characterised by fragmentation. User/patient or communitygroups lobbying around specific issues, for example, breastcancer, have led to uneven service developments. Strong andRobinson (1990) (cited in Lupton et al, 1998) maintain that NHSreforms overall have militated against increasing user and publicinvolvement as health authorities have focused attention onimplementing national agendas.

While user and public involvement is not an original concept, theextent to which this has been a reality is debatable. According toDick and Cunningham (2000), several user and communitymovements, together with policy developments have convergedover recent decades to make user involvement a necessity in theplanning, management and delivery of health social care. Themain contributory trends they identified were:

• The emergence and activism of assertive organisations ofpeople who use services and take action as campaigningand collective advocacy groups.

• The development of a ‘social model’ of disability whichemphasises the need to tackle discriminatory attitudes,economic, social and environmental barriers.

• The growth of philosophies of care such as normalisationand social role valorisation which emphasise socialintegration and a valued life for people who havetraditionally been excluded.

• The translation of the market and consumerism intopublic services bringing the concept of the service user asconsumer.

• An emphasis on responsive services, quality assurance,charters and users and carers as experts.

(Dick and Cunningham, 2000, p2)


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A Literature Review

Other reasons identified in the literature explaining the surge ofinterest in user and public involvement in health services can besummarised as:

• A shift in the political philosophy and perception of therole of the state (McCrae et al, 2002; Williams and Grant,1998; Barnes and Evans, 1998).

• Rejection of professional dominance or that the views of‘experts’ should go unquestioned (Hogg, 1999).

• An increase in lay knowledge and a general movetowards more forms of self-help (McCrae et al, 2002;Olzsewski and Jones, 1999; Barnes and Evans, 1998).

• An increased awareness of patients’ rights and of medicaluncertainty (McCrae et al, 2002; NHS Executive et al,1998).

• A shift from acute to chronic health problems (McCrae etal, 2002; Brearley, 1990).

• Acceleration of healthcare costs and the focus onrationing and targeting resources (McCrae et al, 2002;Barnes and Evans, 1998).

• Developments in health technologies and scientificknowledge raising ethical, moral and political issues thatrequire broad debate (Barnes and Evans, 1998: NHSExecutive et al, 1998).

Table 1 summarises key landmarks in the development ofinvolvement in health services identified from the literature. Itshows a scene set for involvement to grow, nourished by explicitpolicy statements and central government initiatives includingPartners in Change (Scottish Executive, 2001; 2000). But thehistoric legacy of the NHS also presents difficult challenges andhighlights areas that might need attention. It was not until 1974that reforms of local government and health services introducedHealth Councils (Local Health Councils in Scotland) as localwatchdogs with a wide remit of “representing the interests of thelocal community”. This was the first time that consultation withpatients and the public was introduced formally into the NHS,over two decades since its inception. It has been suggested that


31

involving the public mainly through this channel has establishedan “unhelpful”, and “somewhat limited”, style of publicconsultation (Hogg, 1999). The introduction of the Patients’Charter in 1991 arguably afforded users/patients the right to haveany proposed treatment, including any risks involved and anyalternatives explained to them before agreeing consent. Inpractice, although the Charter played some part in bringing abouta change in outlook within health services (SHF, 2000), it has a“contentious public reputation” due to lack of clarity about itsaims and inadequate user and staff involvement in its creation(Farrell et al, 1998).

It is clear to several commentators that involvement requiresmuch more than cosmetic changes within the health services andfurther that there are implications for the overall culture of theNHS. Inevitably, parts of the health care system will be morefamiliar with involvement both as a concept and a practical reality.The 1997 White Paper Designed to Care underlined governmentalinterest in promoting better partnership between those who usehealth services and the professionals who delivered them tobring about a “patient focused service”. Within the context of‘clinical governance’, NHS Trusts were now obliged to ensurepatients and the public become fully involved in determining thequality of services. More recently, Our National Health - A plan foraction, a plan for change, (Scottish Executive, 2000) included acommitment to strengthen users/patients and the publicinfluence in the NHS, and to create opportunities for ‘realpartnerships’ to bring about ‘real change’ across Scotland. Its twocore aims were to ensure users/patients had a stronger voice andthat people and communities were involved in the design anddelivery of health services. A significant development in the pastdecade has been such formal recognition of wider, non-servicebased influences on health and the promotion of a public healthagenda (Scottish Office, 1999).


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A Literature Review

Development of Involvement in ScottishHealth Services1948 The NHS is born but focuses on individual patients while

local authorities retain responsibility for public healthmatters. Limited involvement of individuals.

1960s Series of public scandals regarding older people, peoplewith mental health problems and people with learningdifficulties raises public awareness of malpractice andpoor quality services.

1968 Medicines Act give patients right to know names ofprescribed drugs.

1974 Health services reform establishes the Health Councilsand the post of Health Service Commissioner to deal withnon-clinical complaints.

1980s Sees development of community health and publichealth movements, and growth of user and advocacymovements. User-led campaigns, for example re breastcancer, mean user involvement becomes moredeveloped in certain areas.

1983 ‘Griffiths Report’ is critical of the consensus managementapproach and insularity of NHS managers, and urgesgreater sensitivity to customers. Introduction ofcompetition, contracts, and the ‘market model’.

1990s Growing interest in consumerism and quality within NHS.The NHS and Community Care Act (Scotland), 1990,emphasises joint working and user and carer involvementin health and social care.

1991 The Patients’ Charter introduced new procedural rights forpatients.

1997 Designed to Care White Paper - vision of “a patientfocused service built on partnership” (p2). Also launchedidea of Healthy Living Centre acknowledging widerinfluences on health and a new public health agenda.

1999 Towards a Healthier Scotland White Paper - recognisesneed to tackle inequalities through action on 3 levels: lifecircumstances, lifestyles and health topics.

2000 Our National Health - a plan for action , a plan for changeincluded commitment to strengthen the influence ofpatients and the public.

2001 Patient Focus and Public Involvement - guidance to betterinvolve users and citizens.

Table 1: Summary of key landmarks in the development ofinvolvement in health services


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2.3. Extent of ‘involvement’ in the NHSThe exploration of the meaning and the history of involvement orparticipation highlights that its development in the health servicesis a complex one. Bell (2000) comments that the NHS has nohistory of involving the public in “any meaningful way”, andMcFadyen and Farrington (1997), in common with other writers,deduced that user participation in the NHS “appears slow todate”. A review of arrangements for consulting users/patients andthe public found them restricted:

“Although health authorities have increased local consultation, itsquality remains dubious, with greatest emphasis on one-offconsultation exercises.” (Jordan et al, 1998)

As Barnes and Evans (1998) claim, the development ofinvolvement is “historically weak” for two main reasons: there is ageneral lack of focus and confusion about what it is; and secondthat many innovations have been one-off projects andinvolvement is not perceived as integral to the way the serviceworks. Our National Health (2000) identified the need for radicalchange to bring about a “patient-centred NHS”, concluding “thereis a clear view that the NHS still does things to people rather thanwith them”. Taken overall, the existing literature indicates thatdespite a rash of involvement activity in many different healthsettings, the “reality does not fully live up to the ideal” (McCrae etal, 2002). A more cynical view of involvement of patients andcitizens concludes:

“The public, as citizens or as users, have rarely been directlyinvolved, except where their views coincide with those of themore powerful.” (Hogg, 1999, page 2)

Despite substantial evidence of involvement activity therefore,there is less evidence of a real shift in power within healthservices or that local people are able to hold health purchasers orproviders to account (Barnes, 1997). The dominance of thetraditional, professionally driven approach to clinical care overperson-centredness in health services is arguably the mainobstacle to change (Williams and Grant, 1998). A recent studycarried out by the Greater Glasgow Health Council attempted to


34

A Literature Review

assess whether changes within the NHS had resulted in morepatient and public involvement and what role the Health Councilshad played. The findings of this survey found practice wantingand suggested, “more is required to be done” (Crawford, 2000).While there were certainly isolated examples of involvementmethods such as health panels being carried out, the issue was“proving hard for Trusts and Boards to address” according to somelocal Health Council Convenors and Health Council ChiefOfficers, who commented that there was a long way to go to“change professional ‘mind sets’”.

The Audit Commission (1996) similarly found users had littleinvolvement in decisions made by GP practices aboutcommissioning services. That involving the public is complex wasdemonstrated by Peck (1998), who undertook a retrospectivecase study of the process and outcome of public consultation onthe proposal of a mental health unit to become a first wave NHSTrust. The overriding conclusion Peck reached was that the legacyof involvement in the health services was at best one of“ambiguity”, while at worst, one of “duplicity” in its approach.Taken overall, this would suggest that there are powerful culturalbarriers to achieving the desired changes within the healthservices. Further empirical research is needed to monitor theapproaches adopted by health services to the public and theresponses they elicit from the public (Peck, 1998).

That such a reality is changing however slowly can be gleanedfrom the research of Hopton and Hill (2001) in relation to therelatively new Local Health Care Cooperatives. These researchersfound evidence that embryonic participatory processes set upthrough LHCCs working in partnership with social inclusionpartnerships or community health projects were influencing andinforming LHCC culture. The locality structure of LHCCs meantthey were “well placed to lead this function on behalf of thewhole system” (Hopton and Hill, 2001, p11). The “Designed toInvolve” project funded by the Scottish Executive for two yearsfrom 1999 to 2001 concentrated on encouraging and supportinginitiatives in Primary Care, and worked extensively throughcontacts with LHCCs. This project has now been succeeded by aninitiative with a wider focus, on encouraging involvement acrossthe board in the NHS in Scotland. This is the “Involving People”


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Team, located within the Health Gain and Quality Division of theHealth Department of the Scottish Executive.

Other developments at Primary Care level include workcommissioned to develop an action plan for involvement within aPrimary Care NHS Trust (Scottish Health Feedback, 2001a), andthe Patients Influencing Health Care project set up to promotepatient centred health planning within Highland Health Board(von Reuser, undated; Courcha and James, 1999). Clearly, thePartners in Change initiative itself is concerned with bringingabout changes in the landscape of involvement in healthservices.

2.4. Benefits of involvementThe argument that public services should become moreresponsive and accountable to the needs of the people who usethem has thus been won - in theory, at least. While it is generallyacknowledged as not that easy to achieve in practice, there isevidence for a number of benefits for the users, as well as thecommissioners and providers, of health services (Department ofHealth, 1999a).

Proponents of user and public involvement have identified avariety of benefits to individuals, organisations, communities andsociety, some of which it must be said, will be easier tosubstantiate than others. These benefits have included:

• Better outcomes of treatment and care.

• Services become more appropriate, responsive and moreeffective as they become more tailored to people’s realneeds.

• Increased accountability of public services leading toincreased confidence of the public in health services, thusreducing the ‘democratic deficit’.

• Improvements in staff and patient morale.

• Development of alternatives - involvement as an ‘agentfor change’.

• Empowering individuals and communities and increasingtheir sense of ownership of health services.


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A Literature Review

• Improved health and a reduction in inequalities.

• For organisations, greater understanding of the linksbetween health and the circumstances in which peoplelive their lives.

• More attention given to cross cutting issues and closecooperation between agencies with a role to play inhealth improvement.

(E.g. SAHC et al, 1999; Doyal, 1998; NHS Executive et al, 1998)

There are many examples within the literature of positive claimsfor user and public involvement in health services. Wilson (1999)highlights the validity of involving users in health services:

“People who use services can be the best judges of the service’sstrengths and weaknesses.”

McIver and Brocklehurst (1999) cite Horder and Moore (1990)who asserted that there is sufficient evidence to make claims forpositive correlations between aspects of communication andpatient satisfaction, recall and better understanding of treatment.Others have suggested more general health improvements:

“Health policies that are open to public accountability, in whichcitizens and users have a strong voice, are likely to lead to ahealthier society where health is put before health care andcommercial interests.” (Hogg, 1999, page 187)

The Department of Health (1999) claimed that involving peoplein influencing decisions that affect them had a positive impact onself-esteem and self-confidence. The success of the latesthealthcare policies will be highly dependent upon radicalchanges in the interaction between users and professionals(Foote and Plsek, 2001). The challenge to the core concepts ofservice and entitlement that have so far been the bedrock of thehealth service, should however not be underestimated:

“This culture of charity in the NHS has often resulted in a take-it-or-leave-it philosophy in our delivery of care. The provision ofservice further tends to imply that the recipient is a passivereceiver of a fixed product. As a result, there are unequal degrees


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of obligation on the part of the provider and recipient, whichmay be a barrier to development of the mature healingrelationship that is needed in healthcare.” (p32)

Foote and Plsek (2001) asserted the time was right to move froma ‘service ethos’ to considering the processes of healthcare as asystem. Systems thinking they argue would encourage the active,“equal-partners relationship” needed. Sang and O’Neill (2001)envisaged user/patient involvement in clinical governance asenriching the delivery of clinical services and the long-termdevelopment of services. Continuous improvement, they state,begins with learning about users/patients’ experiences. As Fisherand Gilbert (2001) conclude, the ‘value-added benefit’ of userinvolvement is that it provides a practical perspective onproblems and their solutions.

2.5. Challenges/barriersNotwithstanding the above benefits, several obstacles stand inthe way of developing effective involvement of users and thepublic. A major challenge that has been identified by the literatureconcerns the perceptions of health services staff. The NHSExecutive, (1998) state that because of their professional trainingand background, health services professionals can feel threatenedby the notion of user and public involvement. The ScottishAssociation of Health Councils et al (1999) allege that:

“The NHS has a fine record of working for people, providingexpert services and care: moving towards working with the publicwill need changes in organisational culture and new skills formanagers and staff.” (page 19)

Moving towards more democratic forms of health care implies ashift in the traditional ‘professional model’ of accountability thathas operated in the health services, where doctors accountabilitywas through professional organisations, and moving away froman ‘economic’ or ‘market model’ towards one of partnership(McCrae et al, 2002). It is often suggested that a radical shift inattitudes as well as organisational structure is required. In fact,some have suggested that the implications seem likely “to provefar more radical than first envisaged” and even that as a policy “it


38

A Literature Review

may come back to haunt those who argued for its adoption as ahealth care goal”, (Williams and Grant, 1998). As Small andRhodes (2000) comment, an interest in user involvement doesnot mean that “traditional conflicts between service providers andusers go away”. Indeed, these authors suggest that professionalsupport for involvement might be limited if it impinges on theirsense of expertise and judgement:

“User involvement is only welcome when it conforms with whatthe professional wants to hear.” (Pearson, 1995 cited in Small andRhodes, 2000)

Confusion about the nature of user and public involvement canact as a significant barrier. The NHS Executive (1998) writes aboutthe “myth of perfectibility” or a perception that if first attempts donot succeed then the whole involvement agenda is abandoned.When there is poor understanding of what user and publicinvolvement is, involvement activities will be uncoordinated, therewill be a lack of clarity about what is being asked of people, andthis will result in a lack of ownership across the organisation.There are limitations as to what can be achieved by user andpublic involvement, and as argued in the previous section it iscritical for the organisation to be clear from the outset about thepurpose of the exercise, who should be involved and how theyare to be involved.

Voluntary organisations, users/patients, the public and healthservices staff may all have different, if equally legitimate,perspectives on the outcomes of partnerships (Lewthwaite andHaffenden, 1997). While it cannot simplify decision-making norprovide a straightforward route to conflict resolution, involvingusers and the public can make the process more visible andensure that voices once excluded are heard so that decisions aretaken within a more democratic framework (Barnes, 1997). It isfurther underlined by Summers and McKeown (1996), thatenthusiasm for the general idea of involvement needs to bematched with “realism and honesty about what can be achieved”.

Many health service staff are not trained to be good at working inpartnership with patients, users, communities or citizens and thisdeficit has to be recognised and addressed at both pre and post


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qualifying training levels. Senior health managers in a survey ofPrimary Care Groups, identified the problems in implementingthe participation agenda as shortages of expertise, time andmoney (Shepherd, 2001). This research found that most hadproduced information leaflets about their practice, but few hadused other mechanisms such as focus groups or communityinvolvement initiatives. It was concluded that the NHS needed todevelop “significant capacity” in order to implement this agenda.Another major issue, given that other public agencies have beencharged with the involvement agenda, is the possibility of‘consultation fatigue’ among citizens and communities whenagencies do not work in partnership.

Difficulties with the concept of representative participation areoften at the core of concerns about involving people (Hoptonand Hill, 2001). Concerns about how to avoid tokenism, findingrepresentatives who are able to focus on broad rather than singleissues, involving ‘hard to reach’ groups, and ensuring that forumsfor public involvement are not dominated by specific interestgroups, are frequently at the heart of the hesitation to involvepeople.

Finally, the obstacle of cost in terms of time and money has to beacknowledged (Cole, 2000). For many health services staff,involvement feels like an added burden onto an alreadyoverwhelming workload. For organisations decisions to incur theextra costs of prioritising involvement also weigh heavily on themanagerial conscience, when they have to be taken alongsidedecisions about spending money on direct services. However, asCole (2000) and others have observed, such investment in thepresent could save both time and money later on.


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A Literature Review


41

3. Involvement of Individuals intheir Own Health Care

Key points - section 3• Research has consistently identified that users/patients

want more ‘person-centred’ consultations with health careprofessionals.

• The quality of relationship with health professionals is a keyfactor in the quality of care identified by users/patients.

• Reasons for involving users/patients in their own careinclude that it results in better health and treatmentoutcomes, and increased user/patient satisfaction.

• There is a growing acceptance of the view of users asexperts in their own right.

• Research has demonstrated close links between personcentred values and approach and effective involvement.

• The three most commonly discussed models in relation toinvolving users/patients in decision-making are - paternalistic,informed decision-making and ‘professional-as-agent’models.

• While there is knowledge about what shared decision-making is, there is less evidence of it happening in practice.

• Evidence is that users/patients would like more information.

• Positive results have been obtained from involving users/patients and their carers in producing information.

• Although patient held records offer potential for meetingsome of the criticisms of poor communication andcoordination in health, there is still a need for furtherresearch.

• The main barriers to increasing the level of partnership aretime pressures, the lack of training, skills and experience, andlack of information.

• Shared decision making has been described by researchersas the “neglected half of the consultation”.

• Studies emphasise that person-centred approaches requiretime, information and training, better interpersonalcommunication, mutual understanding and trust.


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A Literature Review

3.1. IntroductionIn Section 1, a distinction was drawn between the ‘involvement’ ofindividuals (and their carers) as users/patients or in user/patientgroups with the ‘involvement’ of the wider public andcommunities. In this Section, the literature concerned withinvolving people as users/ patients is discussed. To reflect the factthat the majority of writers use the terms ‘patient involvement’,this review has adopted the terminology ‘users/patients’ whenreferring to the involvement of those who receive health services.

While it is acknowledged that ‘users/patients’ are not ahomogenous group, there has not been the time to consider inany depth, specific issues pertaining to for example, people withdementia, or people with learning disabilities or mental healthproblems despite a wealth of literature in these areas. The issueof the involvement of people with dementia has however beenthe focus of a separate project by the Dementia Centre. Withinthe disability movement itself there is in fact strong antipathytowards single interest or disease group approaches because thisleads to fragmentation and focuses on differences rather thancommon issues. Overall, therefore, this review has concentratedon broad general issues of involvement and makes only passingreference to specific groups.

3.2. User/patient participation as aconcept“Today’s patients live in a brave new world in which they havetheir own Charter, actively encouraging them to ask questions,demand their rights and what’s more, to expect to have themgranted. While they still can not exercise the ultimate in patientchoice, euthanasia, they live in an era in which...ever greaterefforts can be made to involve them in decisions about theirown health care.” (Greenwood, 1996, p15)

The above quotation suggests that users/patients receive moreopportunities for greater involvement in their own care than in thepast, but in reality it might still depend upon where they live, theirrace, disability, gender, and other socio-economic variables, aswell as whether the health professionals treating them pursue


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user involvement through their practice. ‘Patient participation’ isnow a widely accepted concept in health, “heralded as a meansof enhancing decision-making and human dignity and enrichingquality of life” (Cahill, 1996). It is widely recognised as a ‘goodthing’, resulting in increased satisfaction and benefits to users/patients. Over two decades ago, the World Health Organisation(WHO, 1978) promoted the right of users/patients to be involvedin their health care. However, according to Cahill (1996) theconcept remains “elusive” and a “modern day icon in need ofcloser examination”. In defining user/patient participation inrelation to nursing, Cahill suggested the following attributes:

• A relationship must exist.

• There must be a narrowing of the appropriateinformation, knowledge and/or competence gap betweenpractitioner and user/patient.

• There must be a surrendering of a degree of power orcontrol.

• There must be engagement in selective intellectual and/or physical activities during some of the phases of thehealth care process.

• There must be a positive benefit associated with theactivity.

Further, Sang and O’Neill (2001) suggest there needs to be a“much more robust and less rhetorical analysis” of user/patientinvolvement and that users/patients themselves had a lot to sayon the subject. Research that has examined users’/patients’preferences for a ‘patient-centred approach’ to consultation inprimary care has showed that most users/patients want theapproach to be ‘patient centred’ (Little et al, 2001). Threeimportant domains of such an approach have been identified ascommunication, partnership and health promotion:

“We have shown that most patients waiting to see a doctorstrongly want a patient centred approach, not only a friendlyapproachable doctor who communicates well but healthpromotion and a partnership approach to both the problem andtreatment. Furthermore, most patients probably want patientcentredness rather more than they want a prescription or anexamination” (Little et al, 2001)These authors argued that doctors should be sensitive to those


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A Literature Review

individuals who are likely to have a particularly strong preferencefor ‘patient-centredness’, as well as those who do not. Othersurveys have consistently suggested that a significant minority donot want the ultimate responsibility for making choices, eventhough they would like more health information (Olszewski andJones, 1998; Entwistle et al, 1997). The Consultation andInvolvement Trust Scotland at the end of their first year ofoperation concluded that less emphasis was being placed oninvolving people in decisions about their own care than oninvolving users collectively in strategic planning, and theexperience of many of the services users they met suggested thatservices took little account of what users wanted (CITS, 2000).Research exploring involvement of users and carers in the careprogramme approach in mental health (Joseph RowntreeFoundation, 1997), found that few users had been asked theirviews about their admission to hospital or knew about complaintsprocedures. Those involved in the care programme approach feltmore involved in planning their own care and treatment, hadmore choice and were better informed about rights and services.

In spite of this, with the traditional somewhat paternalisticrelationship between doctor and user/patient buckling underpressure both from within the consultation and externally,through changing societal norms, the ‘patient centred’ approachappears to be gaining increasing support (Toop, 1998). Thedefining features of this model have been identified as a focus onthe whole person; the doctor’s knowledge of the patient; caringand empathy; trust; the choice of appropriately adapted care; andthe user’s/patient’s participation in decision-making (Leopold etal, 1996 cited in Toop, 1998).

Research into patient-doctor interactions or consultations hasidentified a range of different models as operating at present. Thethree most currently discussed models of treatment decision-making are ‘paternalistic’, ‘informed’, and the ‘professional asagent’ model (Coulter, 1997). In the paternalistic model, it isassumed ‘doctor knows best’ and the patient adopts a passiverole. The second model is informed decision-making where thereis an exchange of information between doctor and patient and adegree of user/patient involvement in arriving at a decision. Themost empowering relationship is one described as the


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‘professional-as-agent’ model, where the doctor acts more like abroker and presents the options and discusses possibleoutcomes of each. As already acknowledged however, few users/patients desire to carry the ultimate responsibility for treatmentdecisions.

Reality of course is usually more complex than such ideal modelswould suggest, and some researchers have observed elements ofall three within a single consultation between a doctor andpatient or over the course of consultations in the case of peoplewith chronic ill health (Charles et al, 2000). The implication of thisis that assessing users’/patients’ preferences for participating indecision making will need to be assessed on an ongoing basisrather than a one-off task.

In the paragraphs that follow, reasons for involving users/patients,perceiving users as experts, effective involvement and advocacy,shared decision making, access to information, patient or clientheld records and the impact of professionals’ attitudes on thedegree of involvement are discussed.

3.3. Why involve users/patients?A number of reasons have been proposed in favour of directlyinvolving users/patients in their own care, which have included:

• It can empower users/patients, giving people a greatersense of dignity and worth.

• Users/patients have demanded more information abouttheir health conditions, treatments and care.

• It is central to the notion of “informed consent”.

• There is some evidence of improved health outcomesand increased user/patient satisfaction.

• Reduction in ‘inappropriate’ use of services as peoplebecome better informed.

• Greater likelihood that users/patients will act inaccordance with the treatment plan if it has beenexplained and they understand it.


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A Literature Review

These reasons will be discussed throughout this Section inrelation to concepts such as ‘shared decision-making’, for whichthere is less empirical evidence than for example, about userpreferences for ‘patient centred’ styles of consultation. A study byGreenhow et al (1998) demonstrated patient satisfaction to bepositively correlated with involvement. This study in a large urbangeneral practice in England explored the effects of consultingstyle on patient satisfaction, and provides support for patient-centred styles of consulting in which patients are actively involvedin the decision-making about their own treatment and care, whileoverall levels of involvement in individual care planning remain.

Keeping involvement top of the agenda was a major conclusionfrom another study, involving six health authorities in England(Haffenden, 1998). This joint study between the healthauthorities, the Long Term Medical Conditions Alliance and 15national voluntary organisations to devise a model for working inpartnership to commission quality services, found similarities ofexperience across a range of patients with long term or chronicillnesses. All highlighted problems with diagnosis, a lack ofinformation about their condition and the options, the need tohave someone to talk to who understood, delays in referrals foroutpatient appointments with specialists, a lack of respect fromprofessionals and a lack of continuity of care.

Having direct involvement in services has been linked withreducing the ‘inappropriate’ use of services as people becomemore confident about when it is appropriate to seek professionalhelp and when self care is sufficient (NHS Executive et al, 1998).It is also claimed that users/patients are less likely to missappointments and to be more likely to carry through treatmentsbecause they understand and agree with it and were a part of thedecision-making process.

3.4. Users’ expert knowledgeThe Department of Health (1999) highlighted a growingacceptance that users/patients and carers are the ‘experts’ in howthey feel and what it is like to live with a particular condition ordisability. As Greatly (2001) points out, it is generally now agreedas ‘good practice’ to involve users in determining their treatment


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and care. The direct involvement of users/patients is based onvaluing the credibility and authority of their perspectives andgiving this an equal footing with that of professionals’perspectives. Evans (1999), writing about the developing patternof good practice in user involvement through the implementationof community care policies, emphasised the importance ofprofessionals learning to value users’ expertise:

“That user expertise is gained not from colleges and formallearning, but from the 24 hour day, day in, day out, experiencesof needing to use services for personal support.” (p9)

Wilson (1999) pointed out that people living with a long-termillness develop expertise and wisdom about their condition andwant to play a part in making decisions about their own healthcare. The implication of this is that a shift is needed in therelationship of power/knowledge (Small and Rhodes, 2000). Thekey to successful doctor-patient partnership according to Coulter(1999) is to recognise that “patients are experts too”. Suchpartnerships require both doctors to be well-informed aboutdiagnostic techniques, causes of disease, prognosis, treatmentoptions and preventive strategies, and users/patients to have first-hand experience about what it is like to live with a medicalcondition or disability, their social circumstances, individual valuesand preferences. The terms ‘person-centred’ and ‘person-centredplanning approaches’ that often appear in this literature will nowbe explored in more detail below.

3.4.1. ‘Person centred planning’

Research has demonstrated a close link between person centredvalues and approach and effective involvement (Dick andCunningham, 2000). To be effectively involved in their care, theusers in a study by Dick and Cunningham (2000) demonstratedthe need to be comfortable with all aspects of the arrangementsfor reviews, to be free to express their views, and to be able tocommunicate in a way that was easy for them. ‘Person-centredplanning’ has evolved over the past twenty years mainly in NorthAmerica, and latterly in the UK. It represents a paradigm shift inworking with people in ways that focus centrally on the individual(Sanderson et al, 1997). Essentially, it is a way of organising


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A Literature Review

around one person, which focuses on the person’s whole life andnot just a particular illness or treatment episode to define andcreate a better future for that person. It has been described as:

“Person-centred planning is a philosophy and an approach, notjust a set of tools and techniques. However, the family of toolswhich are used in person-centred planning provide a practicaldemonstration of philosophy in action.” (Ritchie, 2002)

Person centred planning is associated with the ‘exchange model’of assessment as described by Smale et al (1993), whichassumes that all people are expert in their own problems andthere is no reason to assume that professionals will or shouldever know more about people and their problems than they dothemselves. Person-centred planning approaches cover a varietyof ways of working with people, all of which focus positively onthe individual and what is going on in his/her life, ensure that theperson is in control of the process and that the medical needs ofthe person do not supercede their universal needs (Jeffrey, 2001).

Person-centred planning developed from a commitment to socialinclusion and the experience of disabled people who lackedcontrol over their lives and felt ‘managed’ by the service systemand that what happens to people who are labelled as disabled ispowerfully shaped by medical models (Ritchie, 2002). ‘Person-centred planning’ is not a procedure of the service system, butthe use of ‘person centred planning’ tools ensures that all thoseinvolved with the person focus on the whole person, theircapacity and what they want to happen in their lives. It offers amore individualised approach to assessment and an empoweringway of involving individuals in deciding for themselves what theywant for the future and the support they need to be in thatfuture. In the mental health field, methods of centrally involvingusers in assessing their own needs and developing their owncare plans were developed in Bristol during the 1990s (Le Grandet al, 1996).


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3.5. Shared decision makingThe notion of ‘shared decision making’ has been well exercised inthe medical journals recently. An increasing amount of literature isavailable, which attempts to define, discuss and measure ‘shareddecision-making’. It is the case that increased participation inclinical decision-making is often presented as an end in itself onhumanistic grounds but also in response to the growing criticismaround poor communication (Elwyn et al, 1999a). While there isextensive evidence that users/patients want more informationand involvement, there is a paucity of knowledge about thecircumstances in which shared decision-making should beencouraged and the effects of doing so (Entwistle et al, 1998;Coulter, 1997).

The NHS Executive et al (1998) assert that when patients arewell-informed and active participants in decision making abouttheir own care and treatment, clinical outcomes are improved.Conversely, there is evidence to show that poor communicationbetween doctors and patients can have a negative effect ontherapy, treatments, and the long-term management of an illness(Elwyn et al, 1999a; Olszewski and Jones, 1998). In spite of this,McCrae et al’s (2002) recent review of the literature concludedthat the concept of shared decision making has been poorlydefined, and further that in reality it does not happen regularly. AsElwyn et al (1999a) assert, shared decision-making in primarycare is the “neglected second half of the consultation”.

There is some evidence to show that treatments are moresuccessful where a patient-centred approach is taken inconsultations (Kaplan et al 1989 cited in Hogg, 1999). Researchwhich has examined the impact of shared decision-makingthrough randomised trials found that some aspects wereimproved such as users/patients’ knowledge of their medicalcondition, satisfaction with the decision-making process, generalhealth perceptions and physical functioning (Barry et al, 1997).However, Florin and Coulter (2001) suggested that shareddecision-making required specific skills that were not yet widelytaught.


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A Literature Review

Three main precursors to shared decision-making have beenidentified by Elwyn et al (1999b) in a study of newly qualifieddoctors: the availability of information, that the timing of thedecision-making process is appropriate, and the readiness ofusers/patients to accept an active role. These researchers foundthe concept of shared decision was “novel” to general practiceregistrars. A subsequent study of experienced GPs by some ofthe same researchers, showed positive attitudes among GPstowards involving users/patients in decisions, providing this waswhat users/patients wanted (Elwyn et al, 2000). The studyconcluded that the benefits of user/patient involvement and theskills required to achieve this approach needed to receive higherpriority at all levels of policy and practice.

3.6. Accessing informationDirect involvement of individuals in their own care requiresaccess to information that is both comprehensive and accessibleto the individual user/patient (NHS Executive et al, 1998). TheNHS Centre for Reviews and Dissemination (1997) argued thatoffering cancer patients full verbal and written information abouttheir condition and its management would “make a majorcontribution to improving quality of care”. Studies consistentlyreport that many people would like more information from healthprofessionals about specific conditions and treatments, but thatgenerally they do not seek this to help them make decisionsabout treatments (Olszewski and Jones, 1998). Having morechoice and having more information about medical conditionsand the treatments available are not necessarily the same thing.

Some studies report positive relationships between thecommunication practices of doctors and health outcomes(Simpson et al, 1991). Many studies demonstrate that users/patients appreciated getting information and conversely that poorcommunication is the number one dissatisfaction with hospitalcare (Olszewski and Jones, 1998). In a survey of users of mentalhealth services, access to good information was significantlyassociated with how satisfied users said they were withcommunity care services as a whole (Rose, 2001).


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The provision of information has been found to improve people’sunderstanding of drug treatments and the likelihood that thesewill be taken as intended. Research also suggests it contributes toquicker and better recovery after surgery, and leads to lessdepression and anxiety (Olszewski and Jones, 1998). The NuffieldInstitute for Health and NHS Centre for Reviews andDissemination (1996) in presenting studies of consultations withcancer patients showed that patients and their doctors maydisagree on the adequacy of the information given. Whilepatients were often dissatisfied with information they received,doctors tended to over-estimate the amount of information givenand might even disagree with the emphasis on the need toprovide more information. The same authors found women withbreast cancer were less anxious when given full verbal andwritten information, as well as opportunities to discuss optionswith clinical staff. Similarly, the NHS Centre for Reviews andDissemination (1998) found that patients with lung cancer whowere given sufficient information were less anxious andexpressed higher satisfaction. Bell et al (1996) for the NationalCancer Alliance found the provision of information to be asignificant issue for cancer patients, and at times became apressing need.

Information appears to be sought to help people manage thesocial, psychological and financial constraints that illness imposes.The desire for more information includes wanting information ondiagnosis, prognosis, risks, results of tests and investigations,therapeutic procedures, drug information, aetiology, care andtreatment following discharge from hospital. Olszewski and Jones(1998) highlight that the majority of evidence about informationneeds comes from professionals’ perspectives while there is a“paucity” of research specifically investigating lay perspectives onclinical information.

Rather than demanding major involvement in treatmentdecisions, Olszewski and Jones (1998) review of the literature oninformation concluded that users/patients wanted to have moreinformation about why the doctor recommends one treatmentover another (Olszewski and Jones, 1998). In this sense, theseauthors suggest, information can be seen as a “means ofestablishing trust” between user/patient and healthcare


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A Literature Review

professional. Although providing more and better information iswidely accepted as a priority in health services, Entwistle et al(1997) argued that it is not always straightforward to implementand it requires substantial resources if it is to be done well.Involving users/patients in the development of informationresources has been shown to be a means of improving theirquality (Coulter et al, 1998).

Involving users and families in the production of ‘patientinformation literature’ was found by Willock and Grogan (1998) tobe essential if such literature is to be relevant to their needs andtruly “client-centred”. Similarly, Kennedy et al (1999) found thedevelopment of a guidebook for people with ulcerative colitis byinvolving patients and self-help groups from the start, was equallywell received. The aim was to produce information in a formatthat allowed patients to manage their condition better and tokeep records of test results, treatment and symptoms. Itsdevelopment was part of the national ‘Promoting Patient ChoiceProgramme’ funded by the King’s Fund. The researchersconcluded that the principles of user involvement in the collationof this guidebook could be extended to other groups.

3.7. Patient or client held recordsSeveral reports have proposed patient held records (PHRs) as away of addressing the problems of poor communication reportedbetween healthcare professionals and patients. Whether or notsuch rights are exercised, users/patients have the right to accessmedical records following from the 1984 Data Protection Act, andsubsequent legislation including the Access to Health Records Actin 1990. However, as Wright and Young (1994) point out, a keyissue in empowering individuals to exercise such rights is the lackof awareness of this right. It is generally claimed that PHR havethe potential to give increased control and autonomy to patients,although this has yet to be tested in many areas of health care.

The idea of patient held records (PHR) is not a new one, it hasbeen around since the 1970s though not widely adopted exceptfor antenatal records and parent-held child development records.User/Patient enthusiasm for the idea has been shown byresearch, for example, Wright and Young, (1994) demonstrated


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enthusiasm from older people for the idea of a ‘health record’containing information useful in an emergency, although theyalso highlight complex issues around access to social and healthrecords. Stafford and Hannigan (1997) demonstrated some of theways that use of a client held record was able to promote userempowerment with users of mental health services and facilitategreater collaboration and communication with health careprofessionals. As a clinical tool, these authors explain the benefitsfor specific interventions.

At a conference in 1998 (Scottish Partnership Agency for PalliativeCancer Care and National Council for Hospice and SpecialistPalliative Care Services, 1998), professionals reported mixedfindings on the use of PHRs. While many found the PHRs“valuable”, the main barrier to the use of PHRs was the lack ofparticipation of professionals. Similarly, Hayward (1998) found thatalthough most cancer patients in a pilot study had been positiveabout PHR, there was resistance from some professionals tofilling it in. However, overall, this writer suggests that havingestablished the use of PHR in the medical unit, communicationwas improving. Further research in this area would be helpful toilluminate the many areas of uncertainty about the use of suchrecords (Scottish Partnership Agency for Palliative Cancer Careand National Council for Hospice and Specialist Palliative CareServices, 1998).

3.8. Effective involvement andindependent advocacyAny discussion of involving people in their own care would notbe complete without reference to the role of advocacy. Whereservice users are unused to being asked their opinions or makingdecisions, and/or there are communication or other barriers toinvolvement, how involved they are might depend upon thesupport of an independent advocate or user self-advocacy group(Dick and Cunningham, 2000). Many service users arevulnerable, or find it difficult to communicate their needs, partlybecause of the very difficulty that led them to be users ofservices in the first place and partly because systems sometimesdisempower people.


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A Literature Review

Independent advocacy services are often thin on the ground.There is widespread consensus that there is a pressing need todevelop advocacy support. A recent Scottish Health Feedbackstudy (2001a) within a Primary Care NHS Trust area in Scotland,found only small-scale advocacy projects with limited resourcesavailable to sustain their activities and the need for majorimprovement in advocacy provision. The principles forcommissioning good advocacy services were set out in ScottishExecutive guidance (2000d). Some of the key features thatadvocacy services should have are:

• They should be firmly rooted in, supported by andaccountable to a community - either geographical or acommunity of interest.

• They must be independent of all service providers.

• They should be able to advocate for service users acrossa range of services, whether provided by health services,the local authority or voluntary organisations.

• They should be properly funded.

• They should be given ongoing assistance and support -but not controlled.

• They should be regularly evaluated, and funded for this.

There are different ways of implementing these and the other keyfeatures laid out in that guidance: there is no “one best way”.Developing independent advocacy is not seen as the soleresponsibility of NHS Trusts, but rather a joint responsibilitybetween local authorities and health services. Standards forindependent advocacy have since been developed by Advocacy2000 (Advocacy 2000, 2002).

3.9. Organisational and professionalimplicationsThe literature suggests doctors’ attitudes can present a formidablebarrier to greater involvement of users/patients in decision-making. Brown’s (2001) study of organisational values in generalpractice and public involvement, found marked differencesbetween general practices linked to service providers’ beliefs and


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attitudes about the purpose of the organisation and the types ofrelationship that were appropriate with users and local people.Leadership models emphasising the medical model or a narrowbusiness approach accorded low value to user involvement, whilethose emphasising teamwork and a broader social role appearedmore compatible with the development of involvement.

An exploratory study by Elwyn et al (1999b) found that registrarsin general practice were not trained in the skills required toinvolve users/patients in clinical decisions. They admitted that‘friendly persuasion’ was their usual practice:

“Sharing decisions entails sharing the uncertainties about theoutcomes of medical processes and involves exposing the factthat data are often unavailable or not known; this can causeanxiety to both patient and clinician. Movement towards furtherpatient involvement will depend on both the skills and theattitudes of professionals...”

While most general practice registrars participating in the researchacknowledged potential benefits from greater involvement,discussions in the focus groups centred on the difficulties ofachieving this. Much medical information was uncertain, andaccording to research participants, there were only a fewconsultations where the problem lent itself to providing a rangeof options. Factors such as the user’s/patient’s “age andeducational achievement” also had to be taken intoconsideration.

Other researchers have highlighted difficulties caused by theimbalance in power in the interaction between doctors andusers/patients:

“Typically, doctors have more power than patients to structurethe nature of the interaction between them. As a consequence,patients may feel that their voice is overridden, silenced, orstripped of personal meaning and social context. To improvecommunications between doctors and patients we need also tounderstand the nature of the decision making that is takingplace in the consultation.” (Charles et al, 2000)


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A Literature Review

In a study of what users/patients said about “patient-centredcancer services”, Bell et al (1996) identified the quality ofrelationship with health professionals as a key issue. Vitalattributes from doctors were “humanity, sensitivity andapproachability”. Creating such relationships would enable betterexchange of information and views.

3.10. Health consumer groups/patientgroupsA growth of user/patient groups has happened alongsideinitiatives to promote user involvement, and therefore deservesmention at this juncture. Some of the more recent groups tend tobe a direct response to particular medical scandals or blunders.The strength of such groups is in raising the collective voice ofusers/patients such as in the case of parents affected by theAlder Hey organ scandal (Cole, 2000). Those involved in suchgroups have learnt how the health service operates throughpainful experiences and have used this knowledge to further theadvancement of user/patient involvement in health servicesmore generally. For example, a member of the parent supportgroup PITY II - Parents Interring Their Young Twice - comments:

“We’d like to see health professionals being more honest andopen in giving information, and not treating people as thoughthey are incapable of understanding anything. A lot of peopleare frightened of asking questions and accept everything thedoctor tells them. But all this has made us aware that we shouldask more and more questions.” (Cole, 2000, p25)

An increasing number of lay people have been appointed tohealth service bodies either as patients or prospective patients torepresent user/patient interests. One of the main lessons fromthe inquiry into the baby deaths at Bristol Royal Infirmary was thatusers’/patients’ - including families’ - needs must be at the centreof the NHS. Some have raised questions about the selection andcontribution of representatives (Williamson, 1998). Membersshould be appointed as representative on the basis of theirhaving the appropriate knowledge for the group’s task, and thevalidity of users’/patients’ and professionals’ views should bejudged by the same criteria.


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4. Involvement in Monitoringand Improving the Quality ofServices

Key points - section 4• It is important to consider ways of involving users/

patients in defining what quality is as well as measuringquality in services.

• Involving users/patients in the quality of services is basedon the principle that users are best placed to say whatthey want out of services and whether the services aredoing a good job.

• The scope of user/patient involvement in clinical auditshas been largely limited to one-off satisfaction surveys.

• There are still few good examples of user involvement inthe whole process of evaluation and service audit.

• There are strong arguments in the research for user/patient involvement in medical audits.

• While there is some evidence of user involvement insetting service standards in other public services, there islittle evidence of this happening in health services.

• There are strong arguments in favour of user involvementin all stages of the development of clinical practiceguidelines.

• There is also an argument for user involvement inpurchasing and commissioning services, although there islimited literature in health on this subject.

• The experience of involving users in research has beenpositive, although genuine involvement takes time andresources.


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4.1. IntroductionIn addition to involving users/patients in their own care,organisations can involve users/patients and their carers infinding out how services are perceived and how satisfied usersare with them. It is important to measure the quality,effectiveness and equity of public services (Barnes, 1997). TheDepartment of Health (1999) stated that involving users/patientsand carers was an important part of improving service quality. Inthis Section, literature about the involvement of users/patients indetermining the quality of services, in service audit andevaluation, in setting standards, purchasing services and researchhas been reviewed. The searches carried out for this review didnot highlight a great deal of literature specifically in the area ofinvolvement in service quality, at least in the field of healthservices. There may be more reports of this kind of activity withinsociologically-oriented journals and other sources, but time didnot allow the search to be extended this far.

4.2. Involvement in the quality of servicesAs the literature reviewed earlier has argued, there are strongpolitical, moral, social and clinical arguments for user involvementand these are as valid when considering involvement in thequality of services as in involving individuals in their own care. AsDickens (1995) states, no matter how service quality is definedand measured, the consistent finding from research is that qualityderives from users’ expectations and experiences and thesatisfaction or dissatisfaction that those experiences provide. It istherefore imperative that users/patients are involved in definingwhat quality is and measuring quality in services.

Bradford’s Home Treatment Service, a community-based servicefor people with mental health problems, has directly involvedusers in defining quality in services through an innovatoryappointment of a service user within the clinical team withpowers to decide how clients are treated (James, 2000). As amember of the clinical team, the service user has “equal say onall matters” and has helped shape the nature of service provision:


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“As a user, Peter knows what it is like to be talked about byprofessionals. He has helped shape the team’s culture awayfrom a feeling of them, the patients, and us, the professionals.He can also communicate with patients in a way the rest of uscannot.” (p6)

There are other innovative examples of how users have beeninvolved both in defining and measuring quality, for instance, atthe core of the ‘Quality Network’ a joint initiative betweenNational Development Team, British Institute of LearningDisabilities, People First Scotland and Speaking Up!, is the beliefthat people with learning disabilities are the experts on their ownlives and therefore, best placed to say what they want out ofservices and whether services are doing a good job. It is firmlyrooted in the social model of disability and the principle of socialinclusion. Although the authors of this review were aware thatseveral health services as well as voluntary organisations inScotland had participated in the Quality Network programme, theliterature search failed to uncover any written accounts of thisexperience at this time.

Another related example, is the quality assurance framework forhospital services devised by the Royal Edinburgh HospitalPatients Council which defines aspects of quality for hospitalservices for people with mental health problems, and how tomeasure them from the users’ perspective (Royal EdinburghHospital Patients Council, 1998).

In terms of involving people in defining and measuring quality, aworkshop held with local community groups alongside healthcare professionals and managers as part of a project to devise anaction plan for involvement in one Scottish NHS Trust, identifiedthe following factors that should be taken into account wheninvolving people in the quality of services:

• Inform people what to expect when they come fortreatment and the possible outcomes of the treatmentitself.

• Involve people in their treatment plans.

• Treat people as people, not a condition.


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A Literature Review

• Regularly ask people what they think of the services.

• Ensure complaints are dealt with quickly and in person.

• Train staff in “good customer relations” - that is, torespond to people, sensitively and positively.

• Organise regular events/opportunities for Trust staff andusers/patients to meet together to discuss experiences ofservices.

(Scottish Health Feedback, 2001c, p10)

4.3. Involvement in looking at how servicesare performingThe ways in which health care systems in the past haveattempted to gather users/patients views on the evaluation ofservices have generally been limited to one-off surveys. Thesehave typically concentrated on determining “user/patientsatisfaction”, a concept whose meaning and usefulness in thecontext of health services have been contested. It is now widelyargued that the limited focus on satisfaction as an evaluativemeasure of health services has “trivialised” the concerns of users/patients by focusing mainly on the ‘hotel’ aspects of care andissues regarding the interpersonal and communication skills ofprofessionals, while neglecting more fundamental aspects suchas outcomes, appropriateness and effectiveness of healthservices (Fitzpatrick and White, 1997). These authors highlightedthat less is known about whether users/patients foundtreatments helpful in relation to their problems than about anyother dimension of quality of health care. The proposed solutionhas ranged from addressing the validity of such measures toproposing that users/patients devise and carry out serviceevaluations independently. Further, if users/patients can help todefine quality, they can contribute to judgements about theextent to which those definitions have been delivered (Newton,1996).

The involvement of users/patients and carers within clinicalaudits needs to be set within the context of the wider debateabout user and public involvement as discussed earlier. A projectto identify the extent of user and carer involvement in clinicalaudit was carried out in the South West of England (Barnard,


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1998). The study found that despite the fact that nearly all NHSTrusts were involving users and carers in clinical audits in someway, the scope of involvement was limited: the majority hadcarried out patient satisfaction surveys (67%) and only 13% ofTrusts had involved users and their representative in settingstandards, and even fewer (3%) had involved users and carers indevising or deciding outcome measures.

Obtaining user/patient feedback when measuring how effective aservice is performing is now a fundamental principle of ‘goodpractice’ (Morris, 1995; Knox and McAlister, 1995). Notions ofconsumerism, a public service orientation and the pursuit ofquality have enhanced this emphasis on service users’perspectives (Knox and McAlister, 1995; Dickens, 1994). Theimportance of involving users/patients in evaluations leads notonly to addressing the issues and concerns of those directlyaffected by the service, but also builds ownership of suggestionsor recommendations arising from the evaluation.

There is an increasing body of research documenting differentapproaches to enabling the inclusion of user perspectives inevaluation, including those of older people with dementia(Murphy et al, 2001). Bamford (2001) concludes from their workthat while involving people with dementia in examining theoutcomes of health and community care proved “challenging”,the ability of users to contribute valuable and unique insightscould not be contested. These insights often revealeddiscrepancies between users’ views and those of their carers(both formal and informal), which further supports the need toconsult people with dementia directly.

While researchers have done much valuable work on how tomake the views of services users central to creating servicequality, there are still few good examples in the literature of theinvolvement of users throughout the whole evaluation process.One such example is a service evaluation carried out by PeopleFirst, an organisation for people with learning disabilities(Whittaker et al, 1990). People First along with a Social ServicesDepartment and researchers explored the views of people withlearning disabilities about moving from institutions into ordinaryhouses as part of a hospital closure programme. Additionally, in


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looking at ‘what makes a good health service’, the Scottish HealthAdvisory Service (SHAS) reviews of learning disability servicesnow gather views of service users as part of their assessment andinclude a ‘service user version’ of their standard assessmentforms sent out prior to SHAS Reviewers visiting the services.

In a review of the literature, Newton (1996) found no shortage ofrecommendations that users/patients should be involved inmedical audits, even though it has become established as a“doctor-led process”. User involvement should be viewed ascomplementary to the clinical expertise of doctors. It wasenvisaged that the best potential strategy for helping this tohappen was to locate initiatives within practices, and to involveusers/patients speaking on their own behalf or of closely relatedusers/patients.

In terms of ongoing audits and evaluating service quality, there isgreat potential for closer partnership between health services andlocal authorities in terms of drawing upon their well-establishednetworks of accountability. For example, in some local authoritiesthere are established Panels of local people who are regularlyconsulted about aspects of services as well as about newproposals (COSLA, 1998). Evidence from research in relation tohousing has shown that such participation is critical to sustainedimprovements (Taylor, 1995). An NHS Trust in Cambridge (Wilson,1999) demonstrated the benefits of setting up user/patientPanels to actively consult users on an ongoing basis. Theexperience of Addenbrookes NHS Trust showed how such aPanel served to improve the Trust’s understanding of users’needs, concerns and the effects of services on their lives.

4.4. Involvement in setting standardsThere is a growing tradition of involving users and carers incompiling standards in Social Work but this is not so wellestablished in Health. For example, Harding and Beresford (1996)described the involvement of different groups of service usersand carers from a wide range of voluntary and user controlledorganisations in compiling standards for social services staff. Theauthors commented that the consistency of what users saidabout the meaning of quality services was “remarkable”. Their


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findings are discussed under three main themes: the quality ofrelationships, the quality of skills and the quality of services. Theevidence from the study showed that people valued thisinvolvement in setting standards of practice and had relevant andvaluable contributions to make to this process:

“When it comes to quality and standards, we should have ourviews taken into account as service users and carers. Serviceusers’ and carers’ voices need to be heard at all levels of theprocess of setting standards and improving quality.” (Hardingand Beresford, 1996, p3)

For several authors, the first step towards community participationin setting health care standards is to ensure user involvement inall stages of ‘clinical practice guidelines’ or as they are sometimesreferred to ‘evidence based clinical guidelines’ (Wersch andEccles, 2001; Bastian, 1996: Duff et al, 1996). These guidelinesaffect not only the quality of care, but access to care and theavailability of choices. It has been argued therefore that usershave a “considerable stake” in being involved in these guidelines.Involvement in clinical guidelines is suggested as one way of“bridging the knowledge gap between health care professionalsand patients” so that joint decision-making becomes more of areality (Duff et al, 1996).

Researchers advocate the use of different strategies incombination to ensure users’ views are incorporated intostandards: for example, the involvement of accountable userrepresentatives in group decision making, user and communityconsultation, and the use of research literature describingpeople’s experiences (Wersch and Eccles, 2001; Bastian, 1996).However, Wersch and Eccles also found, while involvement wasdesirable, it was not always “straightforward”, especially whenusers were included in guideline development groups that alsoincluded professionals. The researchers’ investigation in the Northof England concluded that there was no “one right way” toinvolve users in this process and that further work was neededon how to achieve it.


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4.5. Involvement in commissioning andpurchasing servicesIf users/patients have been involved in evaluating the quality ofservices and in identifying service gaps, it seems reasonable tosuggest there is a place for user involvement in purchasingservices. Indeed, some authors have specifically advocated thisapproach in relation to people with disabilities (Simons, 1999;Herd and Stalker, 1996). However, there is a general paucity ofliterature on this subject. A seminar held in 1996 to discuss issuesaround purchasing services for people with learning disabilities,challenging behaviour and mental health needs, recommendedinvolving users and carers in service specifications andagreements to help ensure services remain relevant to lifeexperiences and wants (Harris, 1996).

The National User Involvement Project was a four-sitedevelopment project carried out by user consultants working withjoint commissioners, local organisations of disabled people andusers of community services (Joseph Rowntree Foundation,1999). It found many commissioners still unaware of key aspectsof facilitating user involvement, and difficulties in involving serviceusers in making commissioning decisions. Dedicating resourcesto outreach work was an effective way of contacting service usersfrom more marginalized groups. Service users needed a range ofsupport and training in order to be fully involved and disabledpeople themselves often believed that commissioners neededspecific training in how to involve them effectively.

4.6. Involvement in researchExperience from setting up research advisory groups of userssuggests there is strong argument for involving users in researchfrom the outset when drawing up the scope and design of theresearch (Rhodes et al, 2001). Lessons from this study were thatgenuine user involvement in research takes time and resources,careful consideration must be given to ensuring ‘hard to reach’groups and researchers need to be open minded in theirapproach and be prepared to listen. More is said about‘participatory research’ approaches in Section 7.


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An approach known as User-Focused Monitoring (UFM) has beendeveloped and implemented by the Sainsbury Centre for MentalHealth (Rose, 2001). This innovative approach empowers serviceusers by giving them real work as interviewers - some 61 userinterviewers were deployed and interviewed over 500 serviceusers living both in the community and in hospital settings. Thisapproach has enabled the voices of the most disabled users tobe heard and for the research agenda to be set by usersthemselves. Further, the approach has allowed the collection of“more accurate and sensitive information about users’experiences of mental health services than traditional,professional approaches”.


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5. Involvement in Planning andDevelopment

Key points - section 5• Since the implementation of community care, user and

public involvement in planning health and social careservices is widely accepted.

• However, the reality often falls short of the ideal - there isless ‘real’ involvement in planning in the longer term thanmight be expected.

• User involvement in planning is essential so that it isinformed by real needs, aspirations, personal experienceand direct evaluation.

• Ideally, users should be involved from the earliest stagesof planning as this offers the best chance that moreresponsive and user-led services will be developed.

• Power differentials need to be acknowledged, and theneed for acceptance of the unique contributions ofindividual stakeholders in the planning process.

• Only through involving local communities, can agenciesarrive at a better understanding of how local servicesneed to change and develop.

• It is important to tap into the expertise of local usergroups and to be aware of national research presentingusers’ views.

• Research evidence on involvement in rationing andprioritising is contradictory. Effective involvement dependsupon allocating sufficient time to discuss options andissues.

• User involvement can also take place at a nationalstrategic level.


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5.1. IntroductionThe third dimension of involvement in health services is inrespect of involvement in the planning and development ofservices. In this Section, involvement in planning is explored andattention is drawn to the experience of community care planning,ideas about including the ‘informed views of citizens’ in planning,involvement in deciding priorities and rationing, and involvementat national level.

5.2. Involvement in planningThe principle or notion that people as users/patients, carers,potential users and interested citizens should be involved in theplanning of health and social care services has become morewidely accepted since the advent of community care policy.Reality, however, often falls short of the ideal, and it remainschallenging to public authorities to find effective ways of involvingpeople in planning in the longer term rather than in one-offconsultations. Bringing the experience and expertise of thosewho use services to the activity of planning is essential forachieving quality. The task of planning can then be informed bypeople’s needs, aspirations, personal experience and directevaluation (Herd and Stalker, 1996). As these authors state, “therecan be no substitute for the real world knowledge of serviceusers.” Fisher (2001) argued that by asking local people abouthealth issues that mattered to them, health planners could arriveat clearer recommendations and that by pursuing these ideascollectively, implementation was more likely.

The NHS Executive et al (1998) commented:

“The expertise and knowledge of those who use health servicescan make an important contribution to needs assessment andservice planning and delivery at an individual level. Theinvolvement of users organised into advocacy groups, voluntaryorganisations and self help groups can enable the collective,accumulated knowledge of services users to play a role in overallservice planning and development.” (p8).


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An early exploration of the issue of user involvement by theNational Institute for Social Work, concluded that users should beinvolved from the earliest stages of planning services orarrangements related to them (NISW, 1993). This offers the bestchance that more responsive and user-led services woulddevelop (Department of Health, 1999a; Herd and Stalker, 1996). Ithas been suggested by Evans (1999) that the knowledge andexperience gained since the implementation of community careis leading to the development of good practice models, and thatthere is much to learn about involvement in planning from this.

A study during 1993 and 1994 by the Social Services Inspectoratewith the National Health Service Executive exploring theimplementation of community care however showed that if usersand carers were involved, it was more likely at day-to-day levelthan at a strategic planning level (Department of Health, 1994).Styles of meetings, the language used, and the complexity of theorganisational systems all contributed to hindering realinvolvement. Nearly a decade on, one would hope that thissituation is improving. A study of involving service users in mentalhealth services showed similar findings (Bowl, 1996). Despite theemphasis in community care planning on user and carerinvolvement, none of the service users interviewed had seentheir community care plan or been consulted on its content.Many were confused as to the purpose of various planningcommittees and it was not unusual for the role to changemidstream. The research demonstrated the critical role ofprofessionals in encouraging action and providing the practicalsupport needed to facilitate involvement.

Research, which has focused on service planning within primaryhealth care, has found that public involvement in health serviceplanning presents many challenges in terms of cultural changeand how best to engage local people (Kirk et al, 1997). Theresearchers found that despite high recognition for the principleof involvement, there were no clear models developed orevaluation to implement this objective.

Herd and Stalker (1996) emphasised the importance ofacknowledging power differentials in planning - that is, theimbalances between the different planning participants in terms


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of their funding, power and obligations within the process.Further, individual service users have had least power in the past.Such imbalances should be recognised and addressed in theplanning process. That different stakeholders will make “differentbut legitimate contributions” should be perceived as a strength.Service users in particular will be able to contribute knowledgeand opinions on the experience of receiving services, what ismissing, challenging conventional wisdom and developing newideas and service standards.

5.3. The informed views of citizensThe second strand of the strategic approach to involvementadvocated by the NHS Executive et al (1998) aimed to empowerpeople as citizens to become more informed about both healthand health service issues and to contribute to decision-making onthis basis. The Department of Health (1999) argues that it is onlythrough involving local communities that a better understandingof how local services need to change and develop will happen.There is a range of methods suitable for achieving this purposeand what they have in common is that they set out to increasethe knowledge of citizens and ask them to reflect on priorities,usually with the support of an independent skilled facilitator. Theissues and questions to be considered are likely to becharacterised by:

• A requirement for value based judgements, choices andassessments of equity and social justice

• Complexity

• Controversy.

(NHS Executive et al, 1998)

Examples include the Age Concern Panels of Older People in Fife,and the recent work commissioned by the Scottish Executive,including Focus Groups with older people, carried out to tap intothe public perspectives about providing free personal care forolder people (Scottish Executive, 2001). Through CommunityPlanning, there is now an onus on local councils to provide‘community leadership’ by setting up partnerships with otheragencies and having responsibility for community consultationand involvement. It was envisaged that this would bring aboutmore participatory forms of government.


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A paper on commissioning health and social services withdisabled people emphasised the importance of using theexpertise and experience amongst disabled people themselves inplanning and commissioning services (Morris, 1995). It wassuggested that designated planning officers should establishclose contact with local organisations of disabled people and thatdisabled people should always be involved when trying toimprove access to services. A number of national bodies such asthe Sainsbury Centre for Mental Health (Rose, 2001) and theNational Cancer Alliance (Bell et al, 1996), have carried outextensive research and consultation with and by service users,which provides a rich seam of information about what users/patients say about services and what they want that could bemined by those involved in planning.

5.4. Involvement in deciding priorities andrationingThere are concerns about involving the public in makingdecisions about healthcare rationing. Some would argue that it is“morally wrong” (Doyal, 1996). The principle of equity andfairness argues Doyal, “must be protected from collective andindividual arbitrariness”. The argument for taking the public’sviews on rationing in the health services into account is foundedon the aim to make health services more democraticallyaccountable, acknowledging that such decisions are essentiallypolitical in nature (Combe, 1999; Coote and Lenaghan, 1997).

After reviewing 20 deliberative public involvement exercises,Combe (1999) concluded that what the public think aboutrationing is unclear. Survey data is not often comparable due tovariance of method and wording of questions. Other conclusionsreached were that the amount of time and money currentlybeing spent on involving the public in rationing decisions ispotentially wasteful because experience is not being shared andlessons are not being learned. It is suggested that it should bepossible to identify how not to involve the public in suchdecisions and to develop a guide to better practice.

The research evidence on involvement in rationing andprioritising is contradictory. Some studies have found public


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reticence at becoming involved in setting priorities, except whenthese are at a very high level of generality (Bowling, 1993). Fromthis research it would appear that citizens do not want to takeresponsibility for collective decision-making. The more specific thelevels of enquiry, the more ‘ill-equipped’ people feel overall. Onthe other hand, Lenaghan et al (1996) concluded from theirevaluation of pilot citizens’ juries to consider priorities for healthcare, that given enough time and information, members of thepublic were willing and able to contribute to this debate. Dolan etal (1999) showed that the public’s views on setting prioritiesdiffered systematically when they were given more opportunitiesto discuss and deliberate. There was greater recognition of thecomplexities of choices and rationing decisions and moresympathy for the managers’ role with increased understanding ofthe issues.

5.5. Involvement at national levelBy involvement at a national level is meant involvement orparticipation that is “concerned with strategic direction, rather thanwith detailed service issues” (Barnes, 1997). It is concerned withuser and public input to training, research and policydevelopment. While it is important to focus on increasedstrategies for user and public involvement at local level, Barnes(1997) highlights the limitations of this approach in isolation fromtackling involvement at a national level. Capacity for change isconstrained and shaped by policy and resource decisions taken atnational policy level, over which local health services have nodirect control. This will demand a variety of methods includinginvolving representatives of user groups in policy making, forinstance People First were involved in the national strategicreview of learning disability services in Scotland (ScottishExecutive, 2000). Other methods might include commissioningnational citizens’ juries to engage the public in issues that arenationally relevant, or developing new ways of involving the publicin this way.

It should also mean working with national colleges anduniversities delivering professional and management training toensure that user perspectives and how to involve users and the


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public are covered in professional training. Barnes (1997) alsosuggests that people should be involved in supporting theevaluation and dissemination of models of good practice in userand public participation. Earlier work by NISW (1993) drawingtogether findings from different studies exploring users’ andservice providers’ experiences, identified the importance of userorganisations in helping to identify the barriers to effectiveinvolvement and in advising how these might be overcome. Aspart of the Allies in Change programme the ScottishDevelopment Centre for Mental Health has recently published aguide or ‘Route Map’ for people who use mental health servicesto review how organisations and services involve peopleeffectively (SDC, 2001).


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6. ‘Repertoire’ of InvolvementMethods

Key points - section 6• A broad array of methods/ways of involving users and the

public has been tried. No one method constitutes‘involvement’.

• The different ways and methods by which users and thepublic are asked their opinions are not ‘neutral’techniques - some consult people as users of serviceswhile others support people to participate as citizens.

• Methods are often classified as qualitative andquantitative research techniques but also as consultationtechniques and deliberative approaches.

• The purpose of involvement has a major bearing on themethods adopted: there are no ‘recipes or fixedformulae’.

• There is no ‘one right method’ and it is possible to useone method to develop another.


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6.1. IntroductionThere are many different ways of listening to people both asindividuals and as collectives or groups. This Section reviewssome of the main methods or techniques to be found in theliterature but does not claim to cover every method: it should notbe taken as the ONLY ways to involve people. Some methods aredifficult to categorise, and others are still to be invented! One ofthe difficulties is that “involvement” is, or should be, somethingthat occurs in every facet of health care and in every encounterbetween user and health care services - for example, a consultantor GP who listens attentively to his/her patient and is prepared toalter their views of the treatment plan etc because of thisinteraction. This can hardly be labelled as a “method” or still less a“technique” of involvement, and cannot be usefully discussedwithin a Section on “methods”. This is an exceedingly importantgeneral point. The most significant forms of involvement arethose that become part of the day-to-day practice of health caredelivery and planning, whether at the level of the individualencounter or at a more collective level, yet these are often theleast visible.

An inevitable limitation of a review such as this is that it draws onpublished accounts, which often describe initiatives where somenew way of drawing on inputs from patients or the public hasbeen tried, or some identifiable method has been tried in a newcontext. There is a danger that this creates the impression thatpromoting involvement is only a matter of adopting and applyingsome identifiable “techniques”. A Section on “Methods” isparticularly prone to intensify such an impression. However, thereare undoubtedly many ideas and techniques that are valuable,and that it would be helpful for those wishing to look for newways to extend involvement to know about. The warning we wishto give here is not to mistake a repertoire of methods for thewhole project of achieving greater involvement.

The overview given in this Section is a general one: we do notattempt to be comprehensive or to give detailed accounts of allthe methods people have used. A wider range of methods andmore detailed descriptions of them are given in a companionpublication to this one, Building Strong Foundations (ScottishExecutive , 2002).


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One further point to bear in mind is that the different ways andmethods by which the public are asked their views and opinionsare “not neutral techniques” (Jones and Jones, 2002). Somerequire people to respond as consumers or users of services,while others support people to participate as citizens. In Section7, community development approaches are explored in moredepth as a more proactive way of developing partnerships withindividuals and communities along the lines suggested byArnstein’s (1969) model of participation (See Section 1). In thisSection, a range of methods more akin to ‘research’, alongsidesome defined as ‘citizen participation’ and ‘participativedemocracy’ are discussed below.

6.2. Classifying methodsIf services are to be shaped by users/patients and the public’sviews, McCrae et al (2002) argued that methods of engagingpeople that are “both methodologically sound and appropriate tothe purpose as well as the people who are being involved” haveto be found. The purpose of involvement has a major bearing onthe methods adopted: There are no recipes or fixed formulae. AsBarnes and Evans (1998) assert, involvement is “not somethingfor which menus can be provided and tasks ticked off”. There isno “one right method”, and it is possible to use one method todevelop another, as in using a focus group to help identifyimportant aspects of particular issues to ask about in a survey(Laird et al, 2000; Cabinet Office, 1998).

A key message from this literature is that no single method willsuffice (SAHC et al, 1999; NHS Executive et al, 1998; Barnes,1997). Methods chosen will depend for example, on whether theintention is to involve a cross-section or representative group, orto involve specific groups who have been historically excludedfrom decision-making (Barnes, 1999; Cabinet Office, 1998). It willalso depend on whether the aim is to draw on the directexperiences of users and carers or the public, to inform the publicand then ask their opinions, to explore uninformed views, or toempower local people or groups to define the problem andpropose solutions.

It is not the intention to replicate what can easily be found in theexisting literature, examples of which appear in the Bibliography


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at the end of this report. What follows is a discussion of theresearch literature about how some of the main methods havebeen used to involve users/patients, the public and communitiesto provide the reader with a flavour of what is available. ThisSection should be read in conjunction with the Toolbox BuildingStrong Foundations that has been developed by the InvolvingPeople Team with Partners in Change (Scottish Executive, 2002).

Much involvement activity has been loosely described as‘research’ because it draws upon the methods of academic andmarket researchers. Traditionally therefore, involvement methodshave been listed according to whether they are quantitative orqualitative. McIver and Brocklehurst (1999) further differentiatedbetween three main categories of methods and techniques:research methods, involvement or consultation techniques and‘new’ or deliberative approaches. Others have rejected anyclassification scheme (Laird et al, 2000). These authors argue thateach approach can be developed and used in innovative waysaccording to the particular purpose, and a strong participativeelement can be built into most approaches. In this review,methods have been discussed under the following four mainheadings to reflect the nature of the literature: qualitative researchmethods, quantitative research methods, consultation techniques,and deliberative approaches. Community developmentapproaches have been discussed separately in Section 7.

6.2.1. Qualitative methods

Qualitative research approaches offer the best opportunity forexploring people’s perceptions, attitudes, ideas etc in some depthand to respond to participants’ own agendas. Being lessconcerned with quantifying an issue or problem, qualitativemethods allow for an exploration of why? and how? Qualitativemethods offer scope for flexibility in design to suit participants’and encourage as active participation as possible. These methodsaim to capture information about people’s understanding andperceptions, the meanings they attach to things and what isimportant to them. Qualitative approaches allow the researcher toadjust according to the responses of participants and to followideas and themes not previously identified. Such methods, whileproviding a rich seam of information, tend however to be bothtime-consuming and expensive.


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Focus Groups

Focus groups tend to by made up of 6-10 individuals invited toparticipate in a group interview process, led by a trained facilitator.This technique allows for exploration of a topic in depth and canbe useful to find out what particular sections of the communitythink about an issue or service. In exploration of user/patientsatisfaction, focus groups have provided “rich and meaningfulfeedback on standards of care” (Evason and Whittington, 1997).Morgan and Krueger (1993) point out that focus groups areespecially useful when there is a perceived power differentialbetween the participants and decision-makers.

Participants are usually selected for their expert knowledge orexperience on the topic under discussion, and because of theirexperiences can “point up inconsistencies and discontinuities andcan reflect on how the whole package works for them” (Evasonand Whittington, 1997). Although important to have a flexiblestructure, the process aims to cover pre-determined areas, whichis especially important if there is more than one group and is whyskilled facilitation is important (Laird et al, 2000; von Reusner,1999).

The patient and purchaser partnership project described byLewthwaite and Haffenden (1997), found focus groups to be apowerful method for identifying problems affecting the quality ofexisting services. Similarly, von Reusner (1999) found focusgroups to be an effective way of channelling potentiallydestructive criticism into constructive recommendations forchange and to be applicable across a wide range of services.Focus groups were found by Laird et al (2000) to be a popularconsultation technique with the majority of organisations in theirsurvey, including health agencies. Raynes et al (2000) concludedthat focus groups were a practical way of collecting informationabout dying patients, alongside other sources of information inplanning and auditing the provision of care.Skilled and independent facilitation has been shown to beessential for successful focus groups in terms of achievingcredibility and giving weight to participants as the ‘experts’ (vonReusner, 1999; Morgan (1993) cited in Lewthwaite and Haffenden,1997). In focus groups with breast cancer sufferers, facilitatorshighlighted the need to create “an atmosphere which was safe


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and non judgemental”, thus enabling participants to feelconfident that their views were being taken seriously by theHealth Board commissioners (Courcha and James, 1999, p16).These researchers recognised advantages of two facilitators forfocus groups in terms of differentiating between the tasks ofactive listening and interacting with the group and accuratelyrecording what participants said. Raynes et al (2000) alsorecognised the need for “skilful facilitation” and “accuraterecording” in focus groups:

“Inexperienced facilitation and poor recording may give rise tobias and misrepresentation of views. One or two individuals mayeither disrupt the group or influence adversely views expressedby other members. In-depth interviews may be more likely toelicit the subject’s true views that may not be fully expressed in afocus group setting.” (p174)

COSLA (1998) provides examples of how focus groups have beenadapted to facilitate a group discussion of an issue and arrive atan agreed position, for example, using ‘nominal group’techniques. This technique has been useful for agenda settingand prioritising listings by users or citizens but cannot be used toexplore issues in-depth. While identifying a number of benefits ofusing focus groups, Chambers (2000) and von Reusner (1999)suggested the drawbacks of focus groups include the narrowfocus on perceptions, that groups may be ‘typical’ but notnecessarily representative, participants may not be ‘informed’about the issues being discussed, marginalized groups may notparticipate and they are time consuming and relatively costly.

User or Health Panels

A User Panel can be a small sample of up to 12 randomlyselected users and managers brought together to discuss specificconcerns. Unlike a focus group that usually only meets once, theUser Panel will meet regularly over a longer period (Service First,1998). This method can be used to highlight problem areas aswell as to test opinion or reaction to changes and proposals.A related concept is the Health Panel, which draw upon thepublic’s views on matters related to health and health services.The principle is to gather 12 randomly selected individualsrepresentative of the population as a whole, to discuss broad


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health issues. Health Panels were first set up in the UK bySomerset Health Authority in 1993 to focus on difficult rationingdecisions (Richardson, 1998). Participants receive briefing papersbefore meetings and are encouraged to reflect on the issues withrelatives and friends. An experienced facilitator ensures there areopportunities for all members of the Panel to listen to eachmember, and they are asked to vote to reflect their decision atthe end of the meeting. Membership of Panels changes overtime to ensure a steady stream of new voices (Bowie et al, 1995).

An evaluation of pilot Health Panels facilitated in Argyll and Clydeby Scottish Health Feedback concluded that the running of theHealth Panels could be seen as an overall success (Macdonaldand Scott, 1999). However, the evaluation also uncovered a self-selection bias in members of the Panel, the majority of whomhad either been employed by the NHS, had or cared forsomeone with chronic illness or disabilities or had been involvedin a community organisation. There were difficulties withfacilitating a group as big as 12 with certain members dominatingthe discussions, despite skilled facilitation. Voting at the end ofthe meeting afforded an opportunity to register minority viewsthat had been lost within the discussion. The briefing system waslargely successful in allowing members to explore topics in depth,although both the facilitators, Scottish Health Feedback, andPanel members felt it would have been useful to have an ‘expert’opinion at times to clarify some issues and that the production ofthe briefings by the Health Board meant this did not always“present a balanced argument”.

Citizens’ Juries

Citizens’ Juries were first developed in Germany as ‘planning cells’and later dubbed ‘citizens’ juries’ in the USA during the early1990s. They grew out of a perceived need to give ordinary citizensa stronger voice in decision-making or to “develop a habit ofactive citizenship” (Stewart et al, 1994). They are perceived bothas an efficient way of obtaining the public’s views and asparticipatory democracy. Juries are felt to offer a structuredmethod of obtaining detailed, considered views from a range ofcitizens on specific topics. They usually comprise 12-16 lay peoplewho hear evidence from a variety of specialist witnesses over


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several days and are then asked to draw conclusions. They arehowever, time consuming and require clarity of topic and the roleof the jury. Members may be representative of particular sectionsof the population or chosen at random from the electoral register.

The Local Government Management Board (LGMB) sponsoredfive pilot projects using Citizens’ Juries and found that juriesproduced new ideas for the Councils and well thought out andbetter informed recommendations than expected (Service First,1998). Others claim that juries are “socially inclusive”, that theyaccess views of people who would not otherwise engage indialogue on issues of public policy, an opportunity for “informeddeliberation”, and encourage “creative cooperative action”(Barnes, 1999). Experience from the King’s Fund pilots showedthat “ordinary wisdom works”, that ordinary people can get togrips with complex health policy issues and produce usefulrecommendations.

A number of lessons were learned from the King’s Fund pilotjuries during 1997 (Davies et al, 1998). There were three key areasof difficulty: how the decisions of the jury can have legitimacy;concerns about the cost-effectiveness of juries; and concernsaround the implementation of jury recommendations. In light ofthis, the King’s Fund suggested the following would indicatewhen it would be appropriate for a health authority to hold acitizens’ jury:

• There is lack of consensus in the host organisation aboutthe answer to a particular contentious question.

• Existing mechanisms to reach consensus have provedunsatisfactory.

• The organisation genuinely wants to answer the question.

• The organisation acknowledges that the public has agenuine and legitimate interest in the question.

• The question that needs to be addressed is at a strategiclevel and has significant operational implications.

• The organisation supports innovation and significantinvestment in local provision.

(Davies et al, 1998, p4)


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Evaluations of this method have found that while participantshave enjoyed participating in a jury, they were frustrated by nothaving enough time to deliberate further, not being sure aboutthe impact of their deliberations and in wanting to continue(Woodward 2000; Barnes 1999b). That juries were accountable tothe sponsors or commissioners rather than the wider public wasidentified by Stewart et al (1994) as a potential limitation whenthese were first introduced into the UK in the early 1990s. Mullenand Spurgeon (2000) similarly comment that despite broadlypositive outcomes, the role of juries was to “influence rather thandetermine priorities”.

Some of the drawbacks that have been identified were thedegree of planning and expense, and that only a fraction of thelocal community were involved (McIver, 1998). In the context ofother involvement methods however, McIver (1998) foundcitizens’ juries had the following strengths: there was clarity aboutthe role and the juror’s task was well defined; the method had in-built mechanisms to ensure that citizens’ views had an influenceon services; and they introduced new elements which served tostrengthen the public involvement process.

The concept of juries has since been expanded to People’s Juriesand Stakeholder Juries in Social Inclusion Partnerships (SIPs). Anevaluation of pilot People’s and Stakeholder Juries in area-basedSIPs in Scotland was broadly positive (Clarke et al, 2001). Themain output from this research by the Institute for Public PolicyResearch (IPPR) and the Office for Public Management (OPM),was a Guidance Manual for SIPs on running the jury process.

Rapid Appraisal

“...seeks to gain community perspectives of local health andsocial needs and to translate these findings into action. Suchmethods have been designed to draw inferences, conclusions,hypotheses, or assessments in a limited period of time and arethus relevant to health service research.” (Murray, 1999)Increasingly popular since the late 1980s, ‘rapid appraisal’ is wherea multi-disciplinary research team gathers information from asmany different sources as possible about the needs of a localpopulation and interviews key informants (Mullen and Spurgeon,


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2000; Chambers, 2000; Murray, 1999). It is ‘rapid’ because it isusually carried out over a short period. Pioneered in developingcountries, this approach is based on the idea that key people inany community can be interviewed in-depth to arrive at arepresentative picture of the views, priorities and needs of thatcommunity. Participants are sometimes selected from broadermeetings called to discuss health issues. Those who areinterviewed might typically represent three main subgroups:professionals, community leaders, and members of the public.This method has been used to identify discrepancies betweensub-groups and has improved communication between thepublic and local health and government bodies (Ong et al 1991cited in Mullen and Spurgeon, 2000).

Rapid appraisal has been used with specific groups of users/patients and to gain broad perspectives on accident andemergency services (Murray, 1999). Rapid appraisal was found byMurray to have the potential to “give substance and effect to therhetoric of community participation” by offering practical ways ofinvolving communities in assessing and meeting needs, and hadpotential to bring about change. Chambers (2000) identifiedpotential bias in the selection of informants and from researchersif they are unskilled or they allow their own view to influence theinterviewees, and issues around the time taken to do projectwork, especially if local professionals carry out the appraisalalongside their other roles.

Study Circles

While there is little literature on this method, it is mentioned byCOSLA (1998) in their guide to approaches and methods tofocusing on citizens. These appear to be groups of between 5-20people brought together on at least three occasions to discuss aspecific issue(s). Their main purpose is to involve local citizens insetting goals for the area in which they live, considering options,choices and scenarios. The approach has been usedpredominantly in the USA, but there is now similar work in Bristol.

6.2.2. Quantitative methods

Quantitative methods are concerned with measuring theincidence and significance of for instance, particular views oropinions as well as behaviours. It is concerned with the question


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of how many and what proportion of the population? Surveys canbe designed so that they are statistically representative of thetarget population. Responses can be statistically analysed andtested for significance, correlations, causal explanations, and soon. Questioning is pre-determined or structured reflecting thecurrent knowledge of the askers/researchers and therefore maynot truly reflect the concerns of respondents. Outputs fromquantitative research reflect this.

Surveys

The most commonly used method of data collection in all areasof health care has been the patient or user satisfaction and othersurveys (McIver, 1999). Questionnaires can be used in face-to-face interviewers or self completed by respondents as in a postalsurvey. Surveys can be a useful method for obtaining reliablestatistical information but if poorly designed, or if only respondedto by a minority, can give misleading results. This method is alsolimited in reaching minority ethnic groups and those withcommunication difficulties.

Research on consulting the public about funding of local servicescarried out by Spencer et al (2000), found that some werepositive about the survey approach highlighting a number ofadvantages. However, local authorities highlighted low responserates and problems with self-selection skewing the balance ofrespondents. Other disadvantages were inability to allowsufficient exploration of issues.

Williams (1994) (cited in Drewett, 1997), asserted that in healthservices, patient participation has been translated as synonymouswith measuring satisfaction. This arises from a belief that surveysare relatively inexpensive, a distrust of qualitative methods and ademand for quantitative data. Drewett (1997) argues that this hasresulted in a lack of innovation and imagination to involvepatients and carers in ways that are more meaningful.Furthermore, the findings of a study by Williams et al (1998)questioned the meaning of ‘patient satisfaction’, suggesting thehigh levels of satisfaction commonly found by surveys wereunreliable. They found that the process by which users/patients


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evaluated services was complex and that many expressions ofpositive ‘satisfaction’ masked a variety of negative experiences.

Surveys have been criticised for their “blandness and tendency toproduce undifferentiated positive responses”, their failure to takeaccount of variables such as age, gender and ethnic origin, andmainly for their “concentration on the organisational and ‘hotel’aspects of care (Evason and Whittington, 1997). Used inconjunction with other methods however, questionnaire surveysand focus groups for example, have been found by Conning et al(1997) to complement each other and enrich and enhance theaudit process.

Citizens’ Survey or Standing Panels

Panels are a well-established market research technique. Citizens’Panels were promoted as part of extending local democracy byinvolving people as citizens in the planning and design or servicesand other policy options. Such Panels have predominantly beenused by local authorities and typically comprise 1,000 or morecitizens who have been statistically selected as representative ofthe local population, area or group (COSLA, 1999). Once selectedand recruited, they can be used for a large number ofconsultation exercises and research programmes subject to thelimits of ‘consultation fatigue’ (Hatter, 1999). It can be costly torecruit and maintain Citizens’ Survey Panels but there is potentialfor sharing resources across different agencies such as healthservices, SIPs and local authorities. The topics addressed byCitizens’ Panels are predetermined by the consulting organisationand any options are usually decided beforehand.Research by Spencer et al (2000) found that local authoritiesvalued the continuity of Panels and the fact that Panel membershad a chance to develop a greater understanding of issues andwere able to give a more considered response. Having a Panelcan raise the profile of user research and lead to thedevelopment of further involvement activities (Service First,1998). Many Panels operated by local authorities are intended toform a closer relationship with a large sample of local citizens(Worcester, 1999 cited in McCrae et al, 2002).


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6.2.3. Consultation techniques

Written consultation

This is the formal means by which people have traditionally beeninvited by health authorities and other organisations to commenton policies and proposals. The aim is to reach a range of keystakeholders and to determine their views on a particular issue,policy or proposal. Written consultation on planning and policydocuments produced by NHS bodies became synonymous withinvolvement or consultation during the life of the CommunityHealth Councils (Hogg, 1999).

Public meetings

Public or open meetings are those that are arranged to enablemembers of the public to express their views on a particular topic,policy or proposal. Such meetings are the traditional and“anachronistic” method of health authorities offering plans andproposals up for public scrutiny (Mullen and Spurgeon, 2000).Experience has shown that public meetings often have lowattendance and are not representative of the community as awhole. In fact, Phillips (1995) suggests those who attend publicmeetings to be “a pretty unrepresentative bunch!”: participantstend to be well educated, well spoken and well off (Jewkes andMurcott, 1998). The cost, weak attendance, and vulnerability ofpublic meetings to lobby groups have been well documented inthe literature (Edwards, 1995 cited in Mullen and Spurgeon,2000).

Conferences

Conferences such as Community Conferences and StakeholderConferences have been used particularly by local authorities andSIPs to raise public awareness and understanding of certainissues as well as to allow the public to raise their own concerns,debate issues and convey their preferences or possible solutions(COSLA, 1999). Conferences, if not planned well, can suffer manyof the disadvantages of public meetings, that is, poor attendance,those attending being unrepresentative of the population overall,and professionally dominated agendas. Some areas haveestablished successful annual Community Conferences, includingsome LHCCs and SIP areas. Green (1999) describes the


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Community Action on Health Initiative (CAHI) in Newcastle UponTyne, which established an annual Community Conference toinvolve local people in discussions with health service staff andmanagers about particular issues, concerns and developments.The agenda for the Conference was shaped by the concernsexpressed by the community during a preceding round of visits tolocal community groups. It was used to set a collective healthagenda and the issues raised direct the work of the CAHI for thefollowing year.

6.2.4. Deliberative approaches

Deliberative Polling

A representative sample of the target population is provided withbackground information on an issue and then invited toparticipate in a discussion about that issue or topic. Polls can becarried out before and after the discussion to test changes inopinion as a result of debate. Deliberative polls develop theconventional idea of opinion polls (Park, 1998). They are able todemonstrate what a more engaged and better informed publicmight think about an issue (McCrae et al, 2002). With largeenough samples that are representative random samples,statistical analyses can be carried out and the results used togeneralise (Park, 1998). However, Laird et al (2000) highlightproblems identified by organisations responding to their survey aspoor attendance or low response rates, and therefore results werenot representative.

Referenda

Referenda can be a useful means of finding out about publicopinion on a major issue or concern of great public interest andwith a high turnout, the results can be used as a “strongindication” of local opinion (McCrae et al, 2002). They are rare ata national level but have been used locally (Laird et al, 2000;Service First, 1998). Experience suggests that a well-conductedreferendum should be preceded by public debates andinformation on the issues concerned (COSLA, 1998). Participantsare asked to vote either for or against particular options or rangeof options. From their research, Spencer et al (2000) suggest thatthe public appreciated the fact that referenda were short andsimple and liked the idea of a vote, but there was little room toagree or disagree with the details of the proposed choices.


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6.3. Other ‘methods’There will be many other ways in which public organisations arecurrently consulting service users and the public, which do noteasily fit into any of the categories above or have not receivedmuch attention from researchers. These include reaching thepublic through open days or roadshows, exhibitions, campaignsand presentations, using new technology, and through ongoingpartnerships with voluntary organisations, having users/patients/members of the public in service advisory groups, users/patientscouncils and so on. Providing a mechanism for people tocomment or complain about services in a range of ways (written,by telephone, face-to-face) can be viewed as a useful way ofgetting feedback from service users (Cabinet Office, 1998). Inaddition to dealing with individual problems, analysis ofcomplaints for instance offers the chance to monitor trends,problem areas and so on.

Many voluntary organisations or interest groups may considerthemselves to have a ‘watchdog’ role. Such organisations providea “ready made source of information” (Service First, 1998). Thisincludes Local/Community Health Councils, Race EqualityCouncils, Self or Citizen Advocacy Groups and many specialistgroups such as Alzheimer Scotland Action on Dementia. As wellas having a view, such groups can tap into a wider representativeview such as that of disabled people or carers.


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7. Involvement ThroughCommunity DevelopmentApproaches

Key points - section 7• Community development is a long-term process of

involving individuals and communities in their ownhealth.

• Community development uses a variety of participatoryresearch methods and activities that address fourdimensions: personal empowerment, positivediscrimination, community organisation, and participationand influence.

• Participatory research approaches have grown out ofdissatisfaction with the traditional power relationships inthe production of research.

• The main purpose of participatory research approaches isto raise awareness and ensure that those affected by theresearch retain control from the outset.

• Community development recognises that access tohealth care services is a less significant determinant ofhealth than many economic, social and environmentalfactors.

• Such approaches challenge the definition of health as anindividual problem for which there are individual solutionsand health care systems that treat symptoms and not theroot causes of ill health.

• Community development is still at a relatively early stageof development within mainstream agencies. There arefew written accounts within the field of statutory healthcare.


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7.1. IntroductionThe previous Section identified a ‘repertoire’ of some of the waysor methods of listening to and involving people in decision-making and determining the quality of services. Using suchtechniques of themselves should not however be confused withpromoting participatory democracy. Many of these techniquesprovide effective ways of gathering opinions, deliberating on anissue, consulting a wider public and so on but they do notnecessarily provide ongoing opportunities for people as citizensto have a say in local health services. In this respect, communitydevelopment approaches differ significantly from otherinvolvement techniques.

The types and levels of involvement discussed in Section 1differentiated between ‘reactive’ and ‘pro-active’ involvementapproaches and between the two broad approaches ofconsumerist and democratic. In this Section, communitydevelopment approaches will be discussed briefly as an exampleof both a democratic and a truly pro-active approach toempowering individuals and communities to be involved inidentifying gaps in health service responses and developing newservices. There are few written accounts of the adoption ofcommunity development approaches within the fields ofstatutory health care, while there is a thriving literature about thecommunity development approach to health (Jones, 1998). Thispicture is bound to change as the emphasis on adoptingcommunity development approaches increases.

7.2. Defining features“The community development approach...embraces certainprinciples, goals and methods of work. Its values and methodsinclude: empowerment, user and community involvement andparticipation, joint working or partnerships between professionalsand service users, accessible, user-friendly services, a clearstructure of accountability and an inclusive approach which workswith, not for, people.” (McShane and O’Neill, 1999, p2)

Community development describes a long-term approach toinvolving communities in their own health. The explicit focus ofcommunity development is on reducing inequalities and


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discrimination and empowering the most marginalizedcommunities (NHS Executive et al, 1998). Hiebert and Swan(1999) argued that community development today challengesprofessionals to ensure that the community that is being‘developed’ includes marginalized groups as equals toprofessionals. Community development uses a variety ofmethods and activities such as self help work, outreach, localaction groups, lobbying, peer work, festivals and events,information, advocacy, group work, network building and pumppriming community initiatives with small grants. However, forthese to be considered community development, Barr andHashagen argue that they would need to address the fourdimensions of personal empowerment, positive discrimination,community organisation and participation and influence (Barrand Hashagen 2000).

This approach requires skills that are not common in the healthservices, except perhaps among Health Visitors and HealthPromotion staff, and so often requires to be imported usuallyfrom the voluntary sector. Johnstone (1993) describes such aninitiative, involving Public Health Nurses working alongsidemothers in the community to empower less experiencedmothers. The key characteristic of community development is thatit starts from the experiences and perspectives of communities.In terms of health, local people need to be enabled or supportedto identify the factors that impinge on their health and thesolutions. It is argued that genuine participation is only possiblewhen there is involvement in decision-making and evaluation(Jones and Macdonald, 1993).

In the course of work with communities in the USA, McKnightidentified that of all the factors that determine health, includingindividual behaviour, social relationships, physical environment,economic status and access to health care, the latter, was theleast significant (McKnight, 2001). McKnight concluded that toinfluence people’s health status, “we need to get beyondmedicine”. Similarly Watt (1987) cited in Jones (1998), in thecontext of a community development conference stated:

“General characteristics of community development healthprojects constitute...an understanding that a health service


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cannot provide effective health care in isolation from its mostneedy users...Projects engage head-on with the medicalprofession, highlighting its centrality and pervasiveness indetermining the nature of health and the health service.”

Community development approaches challenge the definition ofhealth as an individual problem for which there are individualsolutions, and health care systems that treat the symptoms andnot the root causes of ill health (McCormack, 1993). Instead, suchapproaches emphasise the knowledge and expertise ofindividuals and communities living through an experience andthe centrality of drawing on this source of expertise to defineproblems and solutions and ultimately to design more effectiveservices.

The main benefits of community development approaches havebeen summarised as:

• Improving networks in a community, which has beenshown to have a protective effect on health.

• Identifying health needs from users’ point of view, inparticular disadvantaged and socially excluded groups.

• Change and influence, as it enhances local planning anddelivery of services.

• Developing local services and structures that act as aresource.

• Improving self-esteem and learning new skills that can aidemployment.

• Widening the boundaries of the health care debate byinvolving people in defining their views on health andlocal services.

• Tackling underlying causes of ill health and disadvantage.

(Fisher, 2001, p134)


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7.3. Community development and healthThe community development approach in health began toemerge during the late 1970s and early 1980s with thedevelopment of community health projects in several parts of theUK, many emerging from grassroots action. Since the 1980s,community development has been perceived as offering somesolutions to the welfare crisis (Jones, 1998). Essentially,community development work acknowledged that health was asaffected by the social conditions of people’s lives such as damphousing, unemployment, or poor access to facilities, as it was bylifestyle choices. Major policy documents including Towards aHealthier Scotland (1999) and Our National Health (2000)highlight the importance of considering life circumstancesalongside lifestyle choices and disease in promoting health andwellbeing.

A World Health Organisation (WHO) position paper (1991) directlylinked community participation to empowerment as a means initself of promoting healthier individuals and environments.Furthermore, research has recognised the significance ofpowerlessness and empowerment to the health of individualsand communities (Wallerstein, 1993). The concept of healthycommunities as developed by the WHO regards activecommunity participation as essential to creating healthycommunities:

“The formation of local social capital can thus lead to thepromotion of shared values and a common vision, integratedplanning and resource utilization, and ultimately to systemicchange.” (Murray, 2000, p101)

There is a growing body of literature showing that being part of asocial network of contacts is protective for health (Fisher, 2001).The effects derive from improved self-esteem, trust andincreased feelings of being in control.


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7.4. Participatory research approachesWith many of the methods discussed in the previous Section,control of the process is still invested in the authority ororganisation. ‘Participatory research’ approaches grew out ofdissatisfaction with traditional power relationships between‘researcher’ and ‘researched’ and a demand from disabled peoplein particular, for more empowering models (Oliver 1996).Community development workers in countries in South America,Africa and Asia pioneered participatory approaches in the early1980s (Jones and Jones, 2002). In contrast to traditional research,‘participatory research’ approaches sought to address the gapbetween the concepts and models as perceived by professionalsor academics and the ways in which individuals and groups inthe community perceive reality. The philosophy underlying suchapproaches is that in order to provide anti-oppressive researchfulfilling a social justice agenda, it is fundamental that the views,perceptions, direct experiences and definitions of knowledge heldby people on the receiving end of services are taken account of,valued and acted upon (Brandon, 2001).

The main purpose of participatory approaches was to raiseawareness and ensure that those affected by the researchretained control over the whole process from the start. As Oliver(1992) argued in relation to disability research, research shouldnot be understood as a set of technical objective procedurescarried out by professionals but “part of the struggle by disabledpeople to challenge the oppression they currently experience intheir lives”. The research question or problem, decisions aboutwho should be involved and who the information was for, wereto be decided by community groups as part of a longer termprocess of investigation, reflection and community action.

The degree of user involvement could be affected by a numberof barriers including discriminatory attitudes, access barriers,issues around resources and representativeness (Brandon, 2001).Nevertheless, there is now evidence of research and evaluationbeing carried out by users and user organisations (Beresford,2000). People with learning disabilities for example, have beeninvolved as originators of research ideas, advisers and consultantsto research projects as well as interviewers and analysers of


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research findings (Ward, 1997; Whittaker et al, 1991). Examplessuch as the experience of the Pilton Health Project serve toconfirm that the way issues are defined, articulated and tackledhave a direct bearing upon the levels and quality of participationand the importance of this approach (Jones, 1998).

7.5. Community development at strategiclevelIn the next few paragraphs, actual examples of the adoption of acommunity development approach in relation to health aredocumented.

7.5.1. Craigavon and Banbridge Community Health and SocialServices Trust

At strategic level, there is increasing evidence that communitydevelopment is seen to be an important part of any participatorystrategy and more resources are gradually being diverted to thisend. However, although the rhetoric is spreading, the change inattitudes and organisational re-arrangements are slower to gainground. The Craigavon and Banbridge Community Health andSocial Services Trust in Northern Ireland is an exceptionalexample of a Health Service Trust which has accepted thatcommunity development has to inform its whole approach. (SHF,2001c; McShane and O’Neill, 1999)

The Trust accepted the contribution of community developmentto the core business of Health and Social Services bymainstreaming this approach across all its programmes of care.The importance of increasing community developmentawareness and skills for other managers and staff was alsorecognised and the Trust was actively committed to a trainingstrategy. It viewed this as a core feature of implementing theGovernment’s strategy on social inclusion, social justice andpartnerships for health and wellbeing.

The Trust’s Community Development Unit has actively workedwith different community groups, ensuring that broader aspectsof health are highlighted. For instance, a Rapid ParticipatoryAppraisal was conducted bringing together various parties such as


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nursing, community work, social work staff and local people. Thisenabled issues to do with housing, the local economy andcommunity infrastructure to be included and worked at toimprove the wellbeing of the community.

7.5.2. The Addiewell Project

One example of local communities becoming involved in settingthe agenda around health was that of the Addiewell Task Group(Addiewell Research Project, 2000). In a joint initiative betweenlocal residents, West Lothian Council and the University ofEdinburgh, the Addiewell Task Group developed indicators andmeasures to do with health and wellbeing that were seen asimportant by the community. The Health Unit based within thelocal Council worked alongside local people to ensure theirparticipation in the identification, definition and proposals formeasuring health indicators. The work was founded on theprinciple that the best people to decide what issues andindicators were important were local people themselves.

7.5.3. Working together: Learning together

A two year training programme, Working Together: LearningTogether, was set up as part of the Scottish Executive’s ‘Listeningto Communities’ programme, to provide training in understandingsocial exclusion, partnerships and Working for CommunitiesPathfinders in Scotland. The programme aims to ensure thatcommunities are involved in “genuine, meaningful partnershipwhere they can exert real influence” (Working Together: LearningTogether website - www.wtltnet.org.uk). There are 60partnerships and 900 people participating in training fromagencies and communities led by a consortium of organisationsincluding the Scottish Community Development Centre,Community Learning Scotland, the Scottish Council for VoluntaryOrganisations, the Poverty Alliance, and the University of Dundee.

7.6. Challenges of community developmentThe community development approach encounters particularchallenges in the context of health care (Jones and Macdonald,1993). While support for the idea of extending community


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development approaches into mainstream health services andother public services has grown, in reality organisations are notalways receptive to the idea of a longer term ongoing dialoguewhich might lead to major changes within the organisation or intoareas that the organisation had not previously considered (Jonesand Jones, 2002). The conclusion of a DHSS (Northern Ireland)(1999) document was that community development is still at arelatively early stage of development within mainstream agencies.It found most NHS Trusts and Boards did not have a stated policyfor a community development approach, and there was a lack offocus for this work and few instances of training for staff in thisarea.

The way of working with and not just on behalf of individuals andcommunities that is central to the community developmentapproach, sits uneasily with traditional western medicine and the‘medical model’ in which professionals know what the problem isas well as the solution. The challenge is not to the value ofmedical expertise per se, but rather to its dominance in respect ofhealth knowledge and the allocation of resources. Few healthservice professionals are fluent with community developmentapproaches and ways of working with, rather than on behalf of,people. In describing a public health programme set up to linknew mothers with experienced mothers and Public HealthNurses in Ireland during the 1980s, Johnstone (1993) concluded:

“Familiarisation of all health care workers with changes in policyand the background of research and development and aims ofpolicy would eliminate some of the frustrations and create amore supportive environment...The community based approachhas proved more effective in achieving change where this isindicated and is likely to be a more useful model forempowerment and self-care then the traditional type of healthcare approach.” (p255)

Subsequently, Johnstone (1993) advocated that the education andtraining of health care workers should include the possibility ofworking in partnership with people rather than for people.Community and user groups and health and social servicesprofessionals need to perceive each other interacting in differentsets of roles and relationships (McShane and O’Neill, 1999).


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McKnight (2001) also highlighted core differences between theshape and function of communities and service systems:communities were based around individuals and families,informal relationships, as well as formal groups, and relationshipsdefined by choice. Service systems on the other hand, hadhierarchical structures designed to ensure “a few people couldcontrol a lot of people” to produce goods or services. Suchstructures ensured uniformity and that goods and services metthe same standards. Each kind of structure has its own (verydifferent) rationale, ways of working and communicating, and thetwo kinds of system therefore often find it very difficult to engageconstructively together. The central concern identified byMcKnight (2001) was that of ensuring people were at the centreand influencing what happens.


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8. Discussion andRecommendations

Key points - section 8‘Good’ user and public involvement has the following keyelements:

• Involvement becomes a core activity, not an add on or a‘top down’ approach.

• A strategic approach is adopted across the wholeorganisation with strong leadership from seniormanagement.

• There is community and organisational development -citizens need to become more informed andexperienced, but organisational systems and practicesalso need to change.

• Partnerships are formed with other local agencies, forexample, Social Inclusion Partnerships and LocalAuthorities, to ensure coordination and cost efficiency.

• No single approach or technique constitutes involvementof users and public.

• Various techniques can be used, which must be chosenaccording to the purpose of the initiative.

• The resource implications of involvement areacknowledged - for example, training, venues, crèchefacilities etc.

• Tangible gains from participating can be identified andthese can be demonstrated and communicated.

• Communication mechanisms are set up to ensure regularfeedback in accessible formats.

• Involvement strategies need to be evaluated andconstantly reviewed as part of a dynamic process ofcontinuous learning.


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8.1. IntroductionAlthough ‘how to do it’ is generally the main question exercisingthe minds of those in health services when approaching thesubject of involvement, as Lupton et al (1998) argued in order todevelop a coherent strategy for public involvement, this questionneeds to be preceded by ‘what for?’ One of the conclusions fromthis review so far is that it is possible to be engaged in numerous‘involvement activities’ including patient satisfaction surveys,without really involving people as citizens if priorities remaindetermined by professionals and the organisation. The historicoverview identified that previous attempts have been weakenedbecause involvement has often been ‘one-off’ or ad hoc projectsrather than part of a strategic approach. Furthermore, suchattempts have often suffered from isolation and marginalisation.Genuine attempts at involvement start from where people asusers or citizens are, recognise the need for relevance, try tomake the process accessible and act upon the findings.

In this Section, we pull together the key issues that have emergedthroughout this literature review, and which in our opinion, formcritical success factors for ‘good’ involvement. Taken together theliterature draws valuable lessons from a range of projects andinitiatives that have promoted user/patient and publicinvolvement in health services that can help shape futureattempts to achieve better involvement.

8.2. An ‘ethic’ of involvementSAHC et al (1999, p140) emphasised that involvement was not an“add on to existing work”, and must be integral to the ethos ofthe organisation, built into the culture and responsive to both thepublic’s needs and to those of the organisation.” Whilerecognising the competing priorities for the health servicesincluding pressures on front line services, the NHS Executive et al(1998) emphasised the need to ensure public participationbecomes a “core purpose” and understood as a way of achievinghealth and health service objectives:

“For consultation to become ‘good consultation’, it must be morethan a top down approach. A truly participative consultativeexercise will involve communities in all aspects of the process;say from identifying the issues affecting their communities and a


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need for views to be sought...to the analysis of the outcomes ofthe consultation and development of appropriate strategies.”(Laird et al, 2000)

Further, Small and Rhodes (2000) emphasise how involvement ifeffective can positively shape the lives of people receivingservices but it must become an ‘ethic’:

“...one has to look for user involvement in the minutiae of liveswith illness, in the giving of information, in the way help isoffered. An ethic of user involvement must frame all encountersthe ill person has and inform the perspective of the care provider.It has to grow in and through structures, practices, expectationsand responsibilities. It is a philosophy and not a procedure...It isabout privileging the voice of those most effected by ill healthand saying that it is just so to do.” (p221).

A practice based study of approaches to effective userinvolvement in individual care carried out by Dick andCunningham (2000) illustrated the value of a “whole organisationapproach”. By this, the authors emphasised the importance ofbuilding involvement into systems and procedures, and forpractitioners to be committed to finding solutions in partnershipwith users.

8.3. Strategic approachThe literature reviewed in Section 2 overwhelmingly concludedthat despite numerous practical examples of involvement activityin the health services, it is rarely part of a coordinated strategy.The case for a consistent joined-up approach is a commontheme in the literature (e.g. Scottish Health Feedback, 2001a;Coote, 2000; Department of Health, 1999a; NHS et al, 1998;Lewthwaite and Haffenden, 1997). One of the lessons learnedfrom the Patients Influencing Purchasers Project in England, wasthat a clear strategy provided:

“A signal that the health authority was prepared to takeresponsibility for the partnership, that there was a demonstrableprocess with resources to support it, and a commitment toevaluate the impact.” (Lewthwaite and Haffenden, 1997, page 25)Effective and meaningful involvement requires a strategic


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approach rather than a series of individual projects. Four differentmodels have been identified from the experience of involvementin different contexts, which when taken together constitute theelements of an overall strategy. These were:

1. Direct participation of user and voluntary groups indecision making at local and national levels andindividual partnerships between clinician and user/patient’

2. Informed views - by developing opportunities to engagewith informal views and experiences of citizens abouthealth and health services’

3. Community development - mobilising communities tobecome participants in defining problems and developingsolutions to health and health service issues’

4. Local scrutiny and accountability - a process ofdemocratic accountability bringing the NHS closer into theprocess of representative government at local andnational level.

(NHS Executive et al, 1998; Barnes and Evans, 1998).


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Building further on the experience to date, there are a number ofdiscernible stages in working towards an effective involvementstrategy. For example, SAHC et al (1999) identified the followingfive essential steps:

8.4. Community and organisationaldevelopmentFor involvement to be effective, it requires an infrastructure ofuser interests, for example, a network of user/patientorganisations providing a strong representative lobby. Barnes(1997) and others (Lewthwaite and Haffenden, 1997) highlightthat effective public participation will only come about with thedevelopment of both the community and the organisation.Citizens need to become more informed and experienced inengaging in a dialogue, but organisational systems and practices

5. Monitoring, evaluation andfeedback - including quantitativeand qualitative methods toinform the development ofeffective mechanisms forinvolvement.

1. Vision/policy - developingthe concepts and principlesof involvement. Importantthat this is led by SeniorManager.

2. Steering and developing thestrategy - a multi-disciplinarysteering group needs to developan effective framework to put theorganisational vision into practice.

3. Audit of current practice- the skills, experiencewithin and the activities ofan organisation need to bemapped.

4. Developing and supporting arange of activities - building onexisting work, reflecting back,supporting ‘winners’, outlinetraining programme etc.


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also need to change to open them up to the involvement of localpeople, as well as developing staff better skilled to work withusers and citizens.

The parameters of any partnership and the expected outcomesneed to be defined and agreed with users/patients (Lewthwaiteand Haffenden, 1997). Further, user, carer and voluntaryorganisations need to develop their capacity to involve a broaderrepresentation of users, and this has resource and trainingimplications for development workers and other staff supportingthese organisations. Local capacity for providing independentadvocacy as well as collective advocacy will also need to bedeveloped (SHF, 2001a; Scottish Executive, 2000).

Users/patients need the opportunity to have a real influence ontheir care and treatment. Many users/patients however, arevulnerable, or find it difficult to communicate their needs, partlybecause of the very difficulty that led them to be users ofservices in the first place and partly because systems sometimesdisempower people. Advocacy services are one major source ofsupport, potentially for any user/patient but particularly for peoplewho are stigmatised and devalued in society and are not used tohaving their opinions sought. The principles for commissioninggood advocacy services have been set out in recent ScottishExecutive guidance (Scottish Executive, 2000c). Because theneed for advocacy crosses agency boundaries, funding andsupport should be agreed jointly between local authorities andthe health service.

8.5. PartnershipsSeveral authors point out the need for health services to work inpartnership with other agencies such as local authorities that arealso attempting to involve users and the public (NHS Executive etal, 1998). This is brought into sharp relief when involving thosewho are chronically or terminally ill:

“Agencies’ failure to engage in a collaborative approach runs thetwin risks of duplication of effort and the commandeering of thetime and energy of people who may have little of both left inthem.” (Small and Rhodes, 2000, p217)

a`


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It is therefore essential that there is joint recognition that theissues that concern people with chronic and terminal illness inparticular, straddle agency boundaries. Given that many peoplehave complex needs that do not fit neatly into one ‘service box’or other, the principle of partnership should equally apply acrossthe board. Considerable experience and knowledge has beengained through the implementation of Community Care policyand planning, regeneration and community safety strategies andso on and there is much anecdotal evidence of joint workingbetween SIPs, local authorities and LHCCs, although lessevidence of the involvement of users in these exercises. Benefitsof collaboration include sharing expertise, joint training, poolingresources, and joint action on cross cutting issues.

8.6. Matching methods to purposeNo single method will be sufficient to ensure involvement ofdifferent publics in a range of purposes (NHS Executive et al,1998; Barnes, 1997). The SAHC et al (1999) emphasise theimportance of choosing methods carefully to ensure their“appropriateness” both in terms of the purpose of the particularinvolvement exercise but also to suit the group of users or thepublic participating. In a chapter dedicated to ‘choosing the rightmethod for the right reasons’, Chambers (2000) states:

“Don’t just do a survey or a focus group because it seems like agood idea or there is a requirement to do it or it will end up as ameaningless exercise at the expense of your time and needlesslyraise other people’s expectations about the possibility of change.”(p96)

A “vital piece of learning to date” is that there is not one but arange of ways of involving people and that the method(s) chosenshould be matched to the purpose and particular circumstances(NHS Executive et al, 1998).

8.7. ResourcesWider participation involves a long-term investment of resourcesto support not only patients or users, but also staff (SHF, 2001a;Hogg, 1999; Lewthwaite and Haffenden, 1997). The costs should


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include reimbursing users for contributing their expertise andskills, providing the necessary support, practical resources such asvenues, crèches etc.

8.8. Tangible gainsWhile it is clear that involvement will not happen overnight, ratherit is an “organic” process (Lewthwaite and Haffenden, 1997), thishas to be balanced against the need for tangible outcomes to bedemonstrated early on in the process. The NHS Executive et al(1998) emphasised the importance of planning for small andearly successes to gain support both within the organisation andthe participating groups.

The work carried out in one NHS Primary Care Trust (ScottishHealth Feedback, 2001a), also highlighted the importance ofbeing flexible enough to respond to ideas that emerged duringthe process from both users/patients and staff. In discussinginvolvement in relation to community care, Mills et al (1997)emphasised that aims and objectives of projects must:

“...be part of a process of shaping decisions. And your projectmust carry some promise of change, or it will be merely a shamand the consumers involved with view it as such...Don’tperpetuate the tokenism of the past by proceeding with a projectthat you believe will not bring about any change.” (pp63-64)

Because involvement projects make significant demands onparticipants’ time and energy, they want to see tangible outcomesfor their investment (von Reusner, 1999). Participants generallywant evidence of some measure of change as a result of theirparticipation.

8.9. Regular feedbackCommonly, projects that have attempted to involve users/patients or the public, highlight the need to provide regularfeedback about progress being made. A study to devise a modelfor engaging local people in identifying need in relation to earlyyears services identified continual communication as a principalsuccess factor (Watt et al, 2000). In this particular project, thereneeded to be communication between the commissioning body


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and the research team, internally between sub-departments ofthe implementing body and between the research team and theparticipants.

This appears to be an issue that is much more significant thanmay generally be realised by those working within statutoryagencies who genuinely seek to extend involvement and mayfeel they are already doing so. Work by Scottish Health Feedback(SHF, 2001a) with local patient and community groups found thatmany felt that their local Primary Care NHS Trust had madeattempts to gather their views, but that they rarely, if ever,received any information about what decisions had been takenon the relevant matter, and what influence the views of thepatients and the public had had. This made the effort toformulate and give opinions seem wasted, and reduced themotivation to engage in future. Similar reactions are widely, ifanecdotally, reported elsewhere.

8.10. Long term commitmentOne Primary Care Trust Action Plan for Involvement (SHF, 2001a)stressed the importance of a long-term programme to buildinvolvement, rather than a one-off action plan that would remainunchanged. Strategic action plans need to be flexible, to grow andadapt. In particular, they must respond to what users/patientsand the public themselves feel about the way it works. Aparticularly strong message from the research carried out by SHF(2001a) was that there is no “one size fits all” with regard toinvolvement. It is more a matter of starting out and tryingdifferent strategies, monitoring and evaluating their effectivenessand finding out what works in each circumstance: a process ofcontinuous learning.

8.11. EvaluationBuilding in evaluation of the involvement strategy is vital andneeds to be in place at the start (Cabinet Office, 1998). This linkswith the point above, that involvement is a long-term processinvolving continuous learning and needs to be set within astrategic context. However, some commentators have found littleevidence of any formal or systematic evaluation of involvement


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and consultation carried out by Scottish organisations (Laird et al,2000). The researchers found that evaluation if it happened at all,tended to be informal and anecdotal, relating to process ratherthan to outcome.

A project exploring user/patient and purchaser partnerships(Lewthwaite and Haffenden, 1997), also found that independentbrokering of partnerships between users/patients, voluntaryorganisations and health authorities as purchasers was needed.This was at two levels: for the process as a whole when a modelfor collaborative work was emerging and, later to maintain themomentum of the partnerships towards agreed aims.

8.12. Shared principles and valuesIn conclusion, ‘good’ involvement is also built upon sharedprinciples and values, arrived at in consultation with allstakeholders. An example of such principles and values is givenin Appendix 1. The core values identified from the literature werethose of transparency, openness and honesty in dealing withusers and the public, ensuring that all communications are two-way and decision making is declared and explained (SHF, 2001a;UKCC 2000; SAHC et al, 1999). Additionally there must be anemphasis on equity and social inclusion in the sense of valuingdiversity and promoting inclusiveness (UKCC, 2000). Finally,partnership and trust are key values in promoting understandingand respect for different roles.


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139

Appendix 1

An example of aims and principlesThe Trust commits itself to a long-term programme tocontinuously extend and deepen patient and public involvementin its work. The aims of this programme are:

• To engage patients of the Trust, and a wide range ofmembers of the general public in Renfrewshire andInverclyde, in helping to plan, monitor, shape anddevelop the services of the Trust;

• To ensure that the culture of the Trust and its staffbecomes such as to encourage, support and promotesuch involvement, and to respond constructively to it;

• By means of such involvement to enable services tobecome progressively more responsive to patients andthe public, and better adapted to provide for their needs;

• To nurture and develop a sense of ownership of theTrust’s services among its patients and among the publicof Renfrewshire and Inverclyde.

The programme will particularly seek to promote the activeinvolvement of those patients and members of the public whoare normally more disadvantaged than most in terms of theiropportunity to voice their views and to influence services. It willdo this through a strategic approach rather than developinginitiatives in an ad hoc way.

The word “involvement” can mean different things to differentpeople. It can range from passive involvement such as gatheringinformation or opinions of service users or potential users aboutan existing service, through to consultation on strategies andplans, representation on planning or decision-making bodies, tothe direct influence of users over the running of services.


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All these forms of involvement are valuable, but if developmentsare confined to the parts of this spectrum that entail little or nochange in the balance of power over services, the programmewill have failed. The aim must be to achieve involvement acrossthe spectrum so that patients and the public have, and feel thatthey have, a real degree of influence on the service.

This long-term programme to build involvement is not somethingthat will be planned now and remain unchanged. It will need tobe flexible, to grow and adapt. In particular, it must respond towhat patients and the public themselves feel about the way itworks. A particularly strong message from the interviewees wasthat there is no “one size fits all” with regard to involvement. It is amatter of trying and different strategies, monitoring and evaluatingtheir effectiveness and finding out what works in eachcircumstance: a process of continuous learning.

The programme will also need to consist of many elements: it isnot a matter of one good idea. There need to be many differentthings happening that reinforce each other.

(Taken from Scottish Health Feedback, (2001), “A Draft ActionPlan for Patient and Public Involvement prepared for Renfrewshireand Inverclyde Primary Care NHS Trust”)

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